ITP does not discrimate when it strikes its next victim. It affects the young and old, rich and poor all over the world. Dealing with this blood disorder is no easy task. The fear and frustration of not knowing where the roller coaster will take us next can be daunting.

This blog is for ITPers to express thoughts, feelings and lessons learned during their ride. Send your post to We want to hear from you.

Friday, November 29, 2013

We have a special Thanksgiving message from Meredith Prescott...

Happy and healthy Thanksgiving to all. A year ago today, I was diagnosed with ITP. It seems crazy that a year can go by so quickly but so painfully slow. I remember this date last year. It fell a few days after Thanksgiving and I was enjoying the best days of my life in college. 

While my whole life has changed, I am thankful for my family, friends, my community, my doctors and my ITP fellows. 

I am so fortunate to be here. Almost all of us take our health for granted until something serious happens. We rarely think about how lucky we are to just to live. Until a moment comes where your life is that close to the line. A moment where you don't know what's ahead. A moment of uncertainty. A future of it. That's what many go through who have ITP. 

For those that are healthy count your blessings and be thankful everyday. This year I'm thankful to be here, to have steady counts on nplate and hopeful next year, I will be in remission. 

To the ITP community, we are thankful to not only have each other  but to have continuously made strides for awareness and funding. Never give up and always fight. Be proud to be a fighter and keep making every day count.

Friday, November 8, 2013

You Are Never Alone!

Do you remember how you felt when first diagnosed with ITP?

Were you afraid, confused and felt all alone?

Bobbie Scott was given the bad news when she went to the emergency room for an eye infection. A CBC showed a platelet count of 16 and she wound up staying in the hospital for three days getting IVIG infusions.

What a shock!!! I'll let Bobbie tell you the rest of the story....

After receiving the IVIG for 3 days my platelets increased to 344 on July 31st. That was the first time I went to see a hematologist in Owen Sound, and he was going to perform a bone marrow biopsy and aspiration on me, but decided against it since my platelet level was high, and in the normal range. I was told I had to get bloodwork done weekly, just to monitor my platelet level.. and they are as follows.

August 8 - 208 
August 15 - 88
August 22 - 92
August 28 - 137   

At this time, since my platelet count had decreased and had been all over the place, the hematologist decided to perform a bone marrow biopsy and aspiration on me. I was given about a 5 minutes notice about it, and I'm so thankful that my husband was with me. We were cramped into the smallest room ever, it was me, my husband, the doctor, his nurse, and the man who was collecting the specimens. The localization freezing needle was such a burning pain and since I was so nervous as well, I was crying and moaning in pain. The whole procedure was awful. The doctor tried to make me feel comfortable by talking to me about other topics but I was in pain.  My husband, Derek, held my hand the entire time, and when it was all over he nearly fainted and had to be sat down on the floor. Seeing a loved one in pain can be very upsetting, and I think that is what caused him to nearly faint. -- Thankfully , the results of the bone marrow and aspiration came back with normal results and no cancer in my bones. 

September 6 - 74
September 13 - 81
September 18 - 54   

The hematologist decided that he would now try me on prednisone. Normally it's a dosage of 1mg/kg that a person weighs, and I weigh 60 kg. However, he started me on half of the dose at 30mg prednisone for a week, and then decreasing by 5 mg each week following.

September 25 - 158
October 2 - 110
October 11 - 100 

 The hematologist decided that he wanted my platelets to stay in the normal range for multiple weeks in a row, so he increased my dosage back to 30 mg. He stated that he wanted me to take the 30 mg continuously for 3 weeks.

October 16 - 166
October 23 - 122
October 30 - 94  

Now, the hematologist has decided to increase my dosage to 50mg prednisone for 2 weeks, and then 40 mg for 2 weeks. When I went to see him on this date, I waited a total of 2.5 hours to see the doctor and only saw him for about 10 minutes. He stated that if I had come in originally with a platelet count of what I had at this time, he wouldn't have started me on prednisone. However, since my platelet count is all over the place, he needed to treat me.
The next day, October 31st,  I was at work when I got a phone call from the hematologist's nurse on my work phone line. She stated that she wanted to make sure I was up to date on my immunizations, especially streptococcus, haemophilus, and Neisseria, because they may perform a splenectomy on me eventually if needed. 

What a way to get news ! The hematologist did not once mention this to me when I saw him the day before! I was very upset to get news like that over the phone with no warning, and I cried in front of my boss and my co-workers. I don't want them to take my spleen. It is the one thing in my body that fights off illness, and I don't want to lose it. I said to the nurse on the phone "what if I don't want him to take it?" and the nurse said "there are plenty of people in this world walking around without a spleen". 

Yes, this may be, but I don't even know how long I was living with low platelets, and I felt FINE! I don't know when my platelets started going low. I have no idea. I'm so completely frustrated because I can't control what my blood is doing. Is there something I can do to change my diet? Exercise? I want to do everything I can to not let them take my spleen at this point in time. I'm struggling with getting advice from my sisters, and my mom, and my husband, and my dad. I just don't know what to do at this point. I've also stopped taking my birth control (since it was the only thing I was ingesting into my body that could affect my blood possibly) to see if that will help or not. 

If anyone has any advice for me, it would be greatly appreciated. My tear ducts have almost completely dried up, because there's nothing left there anymore. I just need a positive, uplifting thing to happen because I don't know if I can take reading on my bloodwork -- platelets (LO).

Since Bobbie sent me this email, she has joined an ITP support group on Facebook and has received wonderfully encouraging support from fellow ITPers. 

I was also able to connect her with Margie Doman who also lives in Owen Sound and Dale Paynter who heads a support group in that area. The amazing thing is that Bobbie works in the same office as Margie's doctor and Bobbie's mom and Margie were classmates in school!!!

Lesson learned.....No matter where you are, how you are diagnosed, or what you (don't) know about ITP.... Help is right around the corner. Maybe not in the same town but with the ITP Support Groups - you are never alone!

Friday, October 11, 2013

I’ve Got What????

Bron Hatton is one tough Aussie! Both she and her son have ITP but they are not letting it get the best of them....

I was diagnosed with ITP in early 1998. I had been having heavy periods and felt really flat, so I thought I was anaemic so went to Docs for some bloods at 10.00 am one morning and went home. By 12.00 pm, my mother and doctor both had started banging on the door of my flat telling me I had to go to hospital as soon as possible. I had a platelet count less than 1000. Hmm, okay, freak me out folks. When I arrived, there had been a horrific accident on the highway with 5 people killed and a couple of kids needing air lifting. So I was put on a bed to the side, told they had to check but it could be leukemia and left me for 6 hours. A very anxious night indeed thinking I was going to die.

Next morning, after all the drama had settled and they got to examine me was when we noticed all the patechiae (I get dry skin so had put the dots down to that), then of course inside the mouth and then my nose started to bleed. I had lived the previous year in the UK and had a really bad dose of the flu that they think may have triggered it. So they did a bone marrow biopsy from my chest (the single most painful thing I have ever experienced), told me I had this thing called ITP, put me on 150mg of prednisone per day and sent me home after 3 days. Let’s see how you get on they said and for the next months it was weekly blood counts and bruises like I was in a fight with Mike Tyson.

 Never send a patient home not telling them the possible side effects of a drug ( bare in mind this was a while ago so Dr Google was just emerging and I wasn’t so computer offey at the time), I put on nearly 40 kilos, would go 72 hours without sleep, my skin was so thin nothing would heal, I grew hair like a nanny goat, I got the shakes, heart palpitations, joint aches like I was 100 years old and moods that could kill a horse with a single look.

This went on for nearly 2 years, with each taper of prednisone dropping the counts. At this point after finally being referred to a hematologist in Sydney (I am 250 km’s away), I was given IVIG for the first of 13 times over 3 years. I had crappy veins, not helped by the pred, so each time a cannula went in it was a nightmare. It got to the point that you got two goes at my arm then the anaesthetist was called to do it, no matter how good they thought they were, it was rarely successful.
I had 3 pic lines (a tube threaded up through my chest) by this point in order that the infusions would get through. I had a total of nearly 3 months in hospital over one year and ended up seeing a counsellor suffering from deep depression associated with all that goes with ITP.

My heamo team at RPA decided to try dapsone and dexamethasone as well , it just didn’t work so splenectomy was the next move. Again a far less educated me said yes, wish I hadn’t. I had the dubious honour of being filmed for the TV show RPA (medical documentary TV programme in Australia) whilst having my operation and all the pre- and post filming it involved. Picture me laying on the trolley in prep room, central line coming out of one side of my neck and a microphone on the other.  They filmed my follow up visit 4 weeks post-surgery with a count of 4000 to find it hadn’t work.  Again, watch and wait and have more IVIG when needed. NO WAY was I ever ever going back on prednisone again.

This was 2000, the same year I first met my husband Nick on line. He was in the UK .The next few years included getting the first of 3 port a caths inserted in my upper chest to make infusions easier and more IVIG to hold me until I was given my first go round with rituximab (rituxin, mabethera etc. many names it has)

 My first port broke so they had to go back in and cut out some tissue and stitch it to my breast bone, fun. The first Rituximab infusion leaked and I had quite the reaction, we soon learnt that I had to have a very slow rate of infusion and pre-treat and mid-way treat with antihistamine and panadol. Yay, it gave me 3 years remission though, so I was thrilled.

During this time I would often get infections and when having my counts checked regularly it appeared I had also developed immune neutropenia (the white cells that attack bacteria), so started to have GSCF Granulocyte colony-stimulating factor  injections which I gave to myself daily. These shots  gave me serious bone ache almost like shin splints which was my bone marrow working hard.
 I had gone from 5 days a week to 3 days a week in the childcare centre where I worked as the whole steroid thing and hospital stays just wore me out and I wasn’t coping with full time work.
 In between this time and in remission, I travelled back and forth to the UK several times to see my soon to be husband and places like Morocco, Spain and Portugal, all while spleen less, though healthy and happily in love.

In 2005, I had a 4 week top up of rituximab after my counts started to go downhill fast and I also planned a wedding and we got married. I ended up spending some time on my honey moon in a hospital with a low count, severe bruising, and patechiae. We had finally worked out that stress was a big trigger for me and planning a wedding with people from overseas will do that to you.

Things settled down for a while and we got on with life. Then the next Christmas, I thought I had pulled a muscle in my shoulder, unable to lift it at all, so went for an x-ray to find that a 10 cm piece of my port tube had broken off between my rib and collar bone and travelled down to within 3 cm of my heart. Rushed down to RPA with a count of 40,000, I had to have an angiogram and have it removed through my thigh under twilight sedation. Then they had to go in under local to have the other part removed  because they could simply not get a vein.:-( There went any easy access for the future.

We knew we had to wait 12 months before trying for a baby after the rituximab so we did and fell pregnant only to miscarry early on in 2006. I had more drops in my count and symptoms, but was keen to have a baby and was told to go cautiously and in 2007, I saw a Chinese herbalist to help me fall pregnant.

He was dismayed to hear I had had my spleen removed and knew just by looking at me and feeling my pulse. In his words, "Some think spleen idle organ till everything else has to do the work” My bone marrow and liver were working overtime and he had a lot of work to do in supporting my blood, but within 3 months of  drinking horrid herbal tea, I was feeling the best ever with great counts. I was pregnant. We were elated.

At 28 weeks my count was 83,000 and they started me on a low dose of prednisone much to my dismay but it didn’t help so at 32 weeks, I was sent to RPA in Sydney to the high dependency unit to have IVIG with a count of 28,000. They wanted it boosted before delivery .The pred gave me gestational diabetes so had to have that monitored introducing even more needles as well as blood counts. Imagine how divine my black and blue body looked. I felt like a junkie and people kept staring at my arms.

I was induced at 37 weeks because they thought Will was going to be huge. It didn’t work, so 4 days later with a huge team, I had an emergency ceaser (they were in a bit of a panic over the ITP thing though the heamo team were ok with it all.) It was uncomplicated and a waste of all the blood and IVIG they had on hand. Will's count was fine, I was fine but later I developed a clot in my leg and had 2 weeks in hospital. Happy girl with new beautiful baby, unhappy girl with ITP and clexane (blood thinners after surgery) injections.

Enjoying motherhood and married life, my counts were steady until 2010 when I had my next round of rituxin with a new heamo after my adored Professor had retired. I live in a country town where I had my past treatments but my new Doctor didn’t have admitting rights to the local hospital so it came to budget and politics. I did have to go to Sydney to have it this time which didn’t impress me but RPA hospital was paying so that’s where I went. One day a week over 4 weeks and it did the trick again. That was December 2010 and I have been as low as 8,000 and as high as 282,000 during this time.

I manage my own ITP so to speak. My heamo and I have a good understanding. (Although we did butt heads over n-plate as he wanted me to try this new sparkling drug because of the costs of Rituximab but I refused due to clotting issues).He has agreed in the future that because Rituximab is successful and pretty much the only thing that works that I can have it again.

We treat reactively, not proactively. I have a count every 3 months because I also have neutropenia so we watch the cycle. If I get a few bruises or patechiae on my abdomen then I watch for a week. If I get any wet patechiae (i.e. blisters in mouth) then I get a count done. I call the lab direct or bless, Ian my pathologist will call and say, "Bron your numbers aren’t great today. I can see a bit of a down turn you may want to check in." I can bounce around from 8,000 to 240,000 in one week so we don’t jump on treatment, and after all these years, I am kind of glad. I just don’t balk at the numbers anymore and you soon learn that each machine reads a little differently and what’s on the film might be different as well.

In May 2011, my husband and I decided to start our own computer business. I was working part time at my job in a child care centre and Will was growing fast. My hubby was feeling ill for a few weeks in August and was tested for Celiac and Chrons disease. It wasn’t that. By the end of September he had been diagnosed with Duodenal adenocarcinoma at age 38. He died in the January 2012, leaving me devastated and alone with Will, then 3.

In June 2012, Will was diagnosed with Autism  which we had inkling had been coming and he had been attending early intervention but otherwise was a very healthy little boy.

In late July, after a day at day care, I put Will in the bath only to find his little legs covered with more than the usual bruises and patechiae all over him. I put back on his clothes and took his straight to emergency. My heart sank,  I knew what is was. Over the next 2 weeks he was admitted and monitored, his count going back up to 53,000 then dropping again and being admitted again with a nose bleed. He was given Tranexamic acid (to stop the bleeding) He ended up throwing up blood so we were transferred by ambulance  to Sydney Children’s hospital. Will had had a mild cold a few weeks before and I had been struck down with the flu. It was such a torment,  I was so ill, my mum had to go with Will in the ambulance as riding in the back made me ever more ill. Finally arriving and him still bleeding, I was a mess. Bless, he was just plain exhausted and had a terrible colour. Imagine my torment thinking I had done this to him, I had handed down this awful disease and made my baby so sick. We stayed for 4 days and he had his first round of IVIG and more Tranexamic acid. We came home with a count of 64,000 and all was fine for the next 12 months, phew. Maybe he was going to be lucky and it was just an acute case.

Despite the stress and my counts down to 14,000 with some other symptoms, this year the rituximab has held its own. Thank god really because in late September 2013, Wills counts dropped to 2000. Again the same symptoms but this time his count stayed low for 2 weeks and he bled on and off but they wanted to watch and wait.  He ended up with a severe nose bleed of 12 hours so we were transferred back to Sydney, more Tranexamic acid and a week in Westmead with 2 infusions of IVIG.

It has been hard to try and back off  on Wills ITP because it is handled so differently in children, so much of what I knew or would have expected treatment wise doesn’t fly with him. There was talk of cauterizing vessels in his nose at one point and doing a bone marrow biopsy whilst he was under ga. In the end they didn’t do bone marrow but they do feel there may be a bigger immune picture in our family. They shrug their shoulders and say it is a watch and wait and they trust me to do just and bring him in if I am worried. He now has a medical alert arm band and all his emergency plans are in place for preschool and day care and for primary school next year.

My dear old haematologist was a Professor at RPA (Royal Prince Alfred Hospital) and had been involved for a lot of years with ITP research. He was always the calmest and easiest to talk to person I had met, not to mention a gorgeous Scottish accent.

He always maintained that it was the symptoms not the count that mattered and that the numbers could often cause far more stress than was required, so that’s pretty much how we treated and how I went about with life.

I have learnt that each and every person I have met with ITP presents slightly differently, reacts to meds differently and is handled differently. They call it idiopathic. I call it idiotic myself.

We have a team for me and a team for Will.  I really trust them and know I can challenge and ask questions of them and feel comfortable this way. They know I read a lot (perhaps too much sometimes). They are always willing to listen to what I do and don’t want and know that I am a very big advocate for my son. I am blessed with an amazing family and close friends and I have learnt to say yes please to offers of any help which can sometimes be hard to do. So we just get on with living life the best we can and deal with the ITP bumps along the way.

Advice I would give to folks new to this thing called ITP is be informed. Ask questions and find a medical team that you feel comfortable with. We are all different, there is not a single person who will be dealt with in the same way. So don’t freak out if somebody else says you should be doing this or that, or is horrified by your response, and don’t be shocked by their treatment either. Try not to focus on all the negative stuff that you read about what you can’t do, eat , drink, smell, etc etc. Focus on life and get on with living it.

Friday, September 27, 2013

Happy ITP Day!!!!!


Meredith Prescott and her best friends
Meredith Prescott has many reasons to celebrate today. She has taken her fight with ITP to a whole new level....

            Today is September 27th,. For almost anybody, this day is another day or a date you look past once its over.  But to me this day is monumental and will continue to be remembered.  Today is ITP day, a day dedicated to spread awareness and honor the lives that have been taken due to a rare and cruel blood disorder.   Today marks the 10-month anniversary of when I was diagnosed.  Today marks one of the most crucial blood tests at the hospital that I will draw as I have been fortunate to be weaning off the medicine, but today’s test will determine which direction I will go.  The irony from day one of my journey still stands strong.
            As I look back over these past 10 months, I cannot believe how much has changed but how fortunate I am regardless of all the challenges I have had to overcome.
            While many of us at 22 would say their biggest accomplishments are graduating from college, getting their first job, or starting a graduate program, mine is far from that. While those are all great accomplishments and should never be underestimated for anyone, those mean an ounce to me compared to what was accomplished on August 11th
            When I think about perspective and life, helping people and giving back to others are the most important values of mine. After writing my first blog post on a whim, which took off with over 6,000 views in just over a week, I knew I was capable of making a difference. I wrote it as a preface for the walk/fundraiser and wanted to utilize my energy into something positive.

The organizers of the walk/festival
This summer I organized with my two best friends and the organization a walk/festival for Platelet Disorder Support Association. PDSA is the sole organization that supports ITP by promoting advocacy, education, and research.  This organization has united many from all over the country who have ITP since it is not common and has amazing support groups for those who have it. Because ITP gets no awareness from the general public let alone no national funding, it was so important that others learn and know what ITP is so that someday there can be more treatment options and a cure.   This was the FIRST big event ever in the tri-state area and raised more money then any walk in the country totaling way above $40,000.
            I am grateful to have grown up in Livingston, NJ.  The community itself along with its residents were beyond incredible by supporting this walk in multiple capacities. 
The town along with many others showed up with over 200 people to walk and participated in the festival, which included the slides, eating, and the silent auction.  The town let us use the highschool’s oval for a few hours and provided security and police.  Local businesses were beyond generous by supplying food, prizes for the silent auction, and a slide.
            I gave my first real speech in my life, which I never thought I was capable of doing, since I wouldn’t even take communication class in college because I was so afraid of public speaking.  Strangers I had never met showed up to the walk and donated and were so excited to hear about something different and unique. It offered perspective to others and people with ITP were so thankful that this day happened and although many couldn’t make it because not many are from my area, they felt encouraged to start a fundraiser in there area.  Some patients came locally and were shocked and so excited to actually see something being done for ITP. Many from all over the country contacted me thanking me and were so happy that to see more being done.  My doctor, Dr. Bussel, a top doctor in the world, spoke along with the organization director.  He had never been to any walk or fundraiser for ITP before, as his office was beyond stunned that this actually happened.  The mayor of my town came and Livingston was a united community on August 11th.
Dr. Bussell, the Mayor of Livingston, Nancy (PDSA) and Alan Karpas
            I’ll leave you with one last story that shows the impact of the walk, being an advocate and speaking up about ITP.  One of my closest friends was wearing the purple sport bracelet this week that I handed out at the walk to give to all the participants.  She wears it everyday and often explains what it is when people ask. She was working for an oral surgeon at the office and decided to check the fax machine.  She never does that, but the secretary was ironically out so she figured she would. She picked up a blood result sheet and decided to look at the platelets.  They said 3. She immediately knew that that wasn’t the normal range because of me and ITP and this whole experience,.  She called the doctor who was at the hospital, and he immediately called the patient and sent him to the emergency room.  The patient originally came in for blood blisters in his mouth but had some bruising, thinking it was a dental related issue not realizing the severity of what was occurring.  Hours later my best friend was told she saved his life and the doctor thanked her.  Every minute matters, every choice matters matters, and every decision matters. I am grateful that my friends are so supportive, intelligent and realize how essential it is that people understand this so lives are not taken due to lack of knowledge by both the public and medical community. Sport purple forever.

Thursday, September 19, 2013

Hello Everyone! My name is Erica and I have ITP. I've had ITP for 26 years. 
My parents took me to the hospital because my nose was bleeding and I was bruised from head to toe. The doctors had told my parents that I had a rare blood disorder. At the time the doctors didn't know how to treat it. As life went on, I would experience flare ups, some minor, others major. I was never allowed to play sports or do any kind of physical activity. Playing with my brothers and sisters was limited because they were very active. Sometimes all I could do was watch from a window.

As I got older into my teen years I had an episode where my platelet count dropped to three...yeah not three thousand but three. Doctors immediately wanted to remove my spleen (apparently that was the “cure”). My dad refused as he thought there would be a better way. After meeting with numerous doctors he finally found someone who would listen. Her name was Dr. Goldberg, and she started me on prednisone and IVIG. I was in the hospital for two weeks. My platelet count would go up and down but eventually stabilized.

As a child with ITP, I went through a lot of teasing because I had the "moon face". I learned how to laugh it off and move on but more importantly, this is where I formed my relationship with God. For the next few years, I would experience a couple of flare ups but nothing major. At that time I had an excellent Hematologist who kept up with my platelet count.

I later on became a preschool teacher (one of my dreams), but I kept getting sick because of the germs and viruses that was going around. One day, I was outside with my students and my nose began bleeding. My first thought was that I had another drop in my platelet count, so I was pretty scared. That day, I was walking home because I lived around the corner from my job. My husband happened to be on his way home and saw me walking. He described my walk like as if I was about to pass out. But I told him I was okay.

Later in the night as I was getting ready for bed, I looked at my legs and saw they were covered in bruises. I immediately called my husband in the room and said we have to go to the hospital. We went to the hospital and doctors ran some tests. I overheard some of the nurses talking and I heard, "do you want me to tell her or do you want to tell her." I started crying right away because I knew my platelet count was lower then I thought. One nurse came in and held my hand and said, “I don't know how you survived the day.” Confused, I didn't know what to say. She continued to tell me what my platelet count was.


So I had to quit my job (a job I loved) as a teacher and my husband gave me the option of not working altogether. He felt that it was more important for me to be as healthy as possible. He knew that it would be difficult for us financially, but he told me that he would figure it all out. Thankfully, there wasn't that much to figure out.

Now I am 30 and haven't had an episode since. I am always checking and I get my blood checked periodically. Though my hematologist told me I would have this for the rest of my life and it is something I am going to have to keep my eye on, I try to stay positive. I started working out, eating healthy and taking my vitamins. I didn't want to spend a lot of time on the couch so I started my own photography business where I have control over my schedule. I also spend a lot of time with my son who is my little hero (ever since I had him my count has been wonderful).

I must say I owe everything to God because He gives me strength. He gave me my husband and my son, who are my support. He has shown me that I may have this disease but I am not defined by it. ITP does not define me, and I jump at any opportunity to tell others the same.

Stay positive...keep smiling...and I am sending hugs to you all. God Bless.

Wednesday, September 11, 2013

What are You Doing for ITP Awareness Month?

September is ITP Awareness Month!!!

We want to let the whole world know about this terrible blood disorder!!

What is going on in your part of the world? 

In the UK, the ITP Support Association is posting "ITP Facts" every day. These are great bits of information you can share with your family and friends via Facebook. Most non-ITPers don't understand our trials and tribulations we face everyday. The "ITP Facts" can help clear up some of the mystery.

They also have daily POP (Pictures of Purple) posts that were sent in from ITPers from around the world. Thanks to Anthony Heard, we can all share this great information every day this month!

In the US, The Platelet Disorder Support Association (PDSA) is sponsoring all kinds of activities including "Pump It Up For Platelets" walks/runs and the "Sport Purple For Platelets Day" (Sept. 27). 

The PDSA has suggestions on ways you help with fundraising as well with their 50 Ways to Fundraise fact sheet.

There are many folks who have activities planned for this month. Please let us know what you are doing by commenting below. Who knows, you may have some surprise visitors attending your event!!!

Thursday, August 22, 2013

Amber Yard emailed this to me so I could share it with you all. Her story reflects the nightmare many of us have experienced...

This is something I will have to deal with for the rest of my life and my nightmare started March of 2012 with a trip to the ER on a Friday. We just lost our house and was in the processes of moving. So every time we went back to the house to get something more, bruises would pop up. My whole left arm was black and blue from moving the fish tank (75 gallons) and under my butt was the impression of a tailgate. 

I was in the ER with no insurance and with platelets at 7,000. I was covered in bruises all over (I looked like a punching bag with hematomas on my upper thighs).The ER did not give me platelets or IVIG's (since I have no insurance) and sent me home. I could have died that weekend, and that is my reality. Platelets are suppose to be at 150,000 to 400,000.

I had 8 rounds of a chemo (which made my hair dead loss like crazy, so I had my husband shave it for me). It was a drug called Rituxan, and up to 100mg of Prednisone a day. My platelets last year topped out at 105,000. It is a roller coaster, up then down, I am at 32,000 as of last Wednesday.  I am with my 2nd Oncologist and I don't know what is next. My medical bills have topped out so far at $300,000 and that was due to all the chemo.

Went last Wednesday for a CBC and had a good feeling it was in the normal range. The next day I got the CBC back and I was not even near normal, under 50,000. Once again I am back in the danger zone. Since this all started I've been in pain and I work full-time and my husband is a full-time student (he keeps saying he will drop out and get a job (that is not an option, he is so close to finishing school). I worked, with the chemo, I really couldn't afford to take off. The stress of all of this is taking its toll on my husband and myself. I am keeping my fingers crossed, that is all I can do and not think to much about it.

I have been tested for everything under the sun and I feel like a pin cushion. We lost our house last year due to cut backs at work (at the same time I was diagnosed with I.T.P). We also sold almost everything and now we sleep on an air mattress. The only thing we have is each other and our 2 small dogs. They always helped when coming home from Chemo. But if it wasn't for the support of my husband I don't think I would have made it this far.

The end of May 2013, I was hospitalized with a count of 14k. I stayed the weekend and got IVIG's, that got my count up to 105k. A week later, I went for CBC and they had already dropped. I was put on Promacta for 32 months and my platelets never got above 40k. So now it’s August and trying N-Plate, I've had 4 injections so far and started at 14k and as of yesterday (8/15/13) I am at 35k. Every week when I get home from my injection, my 2 Chihuahuas comfort me with their warm little body's to soak up the stress. Like everyone has said, it is a roller coasted and you just have to hold on because the safety belt doesn't work.

It is still very hard to get up every morning knowing that I am the bread winner right now in my household. I wake up either in pain or more tired than I went to bed but I have to keep going. I am very lucky to have found Charity Programs in my area that have helped me with medical bills and medications. But it is still hard to live a normal life even though I try.  

Amber Yard
diagnosed 3/2012

Thursday, July 25, 2013

Samuel Lollman has to be one of the most cheerful kids around. He has had ITP since he was a wee lad but that beautiful smile never disappears from his adorable face.

His mom, Julie shared their story of bruising, hospitals, treatments and determination to live a full happy life in spite of ITP....

We jokingly refer to Samuel as our million dollar baby. Being a preemie and spending a month in ICU will earn you that title.

A year after he was born there was little sign that his life started out fierce and fighting. Cruddy ventilator lungs was the only lasting sign. Samuel was  your average 3yr old who loved life and left nothing unexplored. 

The first bruising we noticed was in 2009. I remember telling my older son that he needed to not be so rough while they are playing. ( awful, I know) It was winter and the boys had been playing in some unexpected OK. snow. Later that day he developed huge bruises across his lower back that seem to get worse and spread out by the day. I was at one point even worried the school would think we were beating our child! I still never had any alarms in my head going off and chalked it up to great outside fun and a clumsy boy. 

A couple months later, I watched Samuel lean over to pick something up and barely hit the corner of his eye. He didn't even flinch and I thought nothing of it. Moments later, I look at him and there is a huge ball on the side of his eye that is black and blue. Bleeding inside his eye and blackened the other side of his face and corner of his other eye. Then the blood looked almost like it was slowly moving down his face. I had never seen anything like it! 

Finally some alarms went off. His brother was going to pediatrician the next day for a followup and I decided I should probably take him with me and just
let him take a look at his face. Our awesome pediatrician did bloodwork just to be safe and when he came back he said that Samuel had only 5k platelets and normal was 150k and above. He then proceeded to tell us that he is at risk for inter-cranial hemorrhage and that he could not rule out leukemia. He told us to head to the hospital and that they would be waiting for us. Ugh. In my head I am thinking, ok, what is a platelet? What did they do? How did a followup appt. end up with us going to the hospital fearing for our child's future? We head home to pack a quick bag and drop off our older son.

At the hospital we waited half the day and night. They gave us a diagnoses and said they were pretty sure it was not leukemia. I've never been so relieved. Samuel began his first of what would be 30 plus infusions of IVIG. The infusion lasted 8 hrs and nasty side effects followed with fever, vomiting and migraine.  

We were given all the odds and percentages for ITP and we were hopeful as the remission rates for his age were great. Only 4% will go on to be chronic as children. 
A week later his numbers were in the 400k range and our hemoc. told us she thought he was in remission. Yeah!

Two weeks later we went for a followup. I noticed bruising coming back and after a CBC, his body had already chewed through most of the 400k platelets and was down to 60.  This became a pattern over the next year. Every two-three weeks he was in hospital getting IVIG infusions. It was definitely a lifestyle change. Weekly blood draws and missing out on fun things because he was in the danger zone. As a Mom and friend, I became the most unreliable person. We could never truly make plans at school or otherwise because we simply did not know what our week would entail. 

After a year, we realized that Samuel is part of the 4% who's ITP is chronic. We explored another treatment option called mercaptopurine . This was an oral chemotherapy  pill given  to leukemia patients as a maintenance drug. Scary, but it was shown to have good results with long remissions. It would be the first time Samuel learned how to swallow a pill and he did it like a champ. He took it at night at certain specific  times. He did not have many side effects, mostly a nauseated stomach. After 4-5 months I began researching the drug and found many disturbing facts about secondary leukemia risks while taking this drug. It was not helping his numbers and his doctor took him off. 

We began discussing splenectomy and vaccinated him and prepared. We decided on doing a bone marrow biopsy to be sure prior to surgery to make sure we were not missing anything. That was tough and glad it was done. During this time we started noticing bruising and bleeding with higher counts. I would assume he was low, take him in for labs and numbers would not match the symptoms. This began a whole series of testing putting splenectomy on hold. Aggregation testing and platelet function testing were coming back abnormal. So not only did his body fight off his platelets, the ones he did have were not functioning. Many, many tests were done for months, specialized tests sending as far as as Wisconsin with no real answers.
In Feb. of 2012 I was getting Samuel's bath ready and I could hear him commenting on how his pee looked funny. I turned and looked and there was a stream of dark brown. It didn't even register what it was at first. You get that familiar pit in your stomach and I knew we were in for a long night. I called our doctor and she said to head to children's and they would be waiting to admit him. This began the scramble of packing bags for the hospital and getting our son Ethan somewhere. We are good at not panicking at this point, but the unknown of "what now" is what can drive you crazy.  He was in the hospital 3 days until the bleeding stopped. He had CT scans, MRI and ultrasounds. His platelet count? 80k! Samuel for sure got everyone's attention. The bleeding was from the kidney so a nephrologist was called in. Due to the bleeding, he could not do a kidney biopsy. He did other testing for kidney function that was normal. The hematologist blamed the kidneys and the nephrologist blamed ITP. At this point we were scared that we did not have a clue at what we were dealing with nor did anyone else. 

We decided to try Rituxan. IV chemotherapy was given once a week for a month. This also unfortunately did not nothing for his counts and was a very long month and rebuilding of his immune system and side effects.  I had already been researching, trying to find a platelet specialist. Boston kept coming up and before long we were headed there for a second opinion.  They were super excited to meet Samuel and the first conversation was spent discussing our approval on putting Samuel on their new study for testing. Although very insightful, our options were still limited. Both Boston and his local doctor are concerned with the possibility that there is something underlying going on that has not surfaced even though he has been tested for everything under the sun. He is an awesome doctor who I am thankful we were lead to. He has discussed Samuel's case with rooms full of oncologist / hematologist around the world who met at oncology conferences for their opinions. How awesome is that! 

So now we are in somewhat of a holding pattern. We have had to stop using the IVIG because of the chemical induced meningitis he was having. The most recent treatment he had is Winrho. It was nothing short of a nightmare. He was a very
sick little man and we had some scary moments with this treatment. 

This brings us to our current date. We will be going to consult about starting NPlate. There is positive information regarding this drug. Although I am very skeptical to keep experimenting with these new drugs. It was shortly after stopping the 6mp that he began the weird bleeding symptoms. Coincidence? I am ready to pull out his spleen and be finished but his doctors are still worried there are other issues. There is actually a test that can help determine whether it is spleen or liver that destroys the platelets. Of course this test is only offered outside of the U.S.  Why? Well there are two thoughts:

1. Not enough need for the test and the isotope that is used in the test is very hard to get and the lab has to be certified to get it which is very expensive and hard. This was concluded from a Red Cross research facility that used to perform the test but can no longer because of the isotope. We had an interesting conversation for sure. 
2. The test just is not a good tool. 

That brings us up to date! 
Who is Samuel? He is not the poor 6yr old that has ITP. He is the most happiest, energetic, kindhearted child. He takes every needle and treatment in stride and can be sick as a dog and wake up smiling. We are not dramatic in speaking with him about his disease and after three years he does not really know any different. We find something fun out of every hospital stay and doctor visit. ITP  is not who he is and to speak to and see Samuel, you would not even know he is sick and that's our goal everyday. God gives his toughest battles to his strongest soldiers and Samuel is a survivor and a fighter. 

Thursday, June 27, 2013

An Ode to Platelets

 Frances Ryan has a blog where she shares her thoughts on dealing with ITP along with other interesting stuff.

She has graciously offered to share her previously published ITP posts with us.

Frances' blog is named Just Frances and can be found at

Here is her piece, "An Ode to my Platelets".....

Once again, I’ve found myself with a lower-than-ideal platelet count. Well, it was very low last week (13!) and I had them re-tested today. Hopefully when the results come in later this week, they’ll be better. In the mean time, I have been referred to a haematologist again. Not that they can fix me, as this silly little condition seems to be sticking around.

But it got me thinking about my poor little platelets and how much I love them. I mean, first of all, my bone marrow is a bit stingy with its output of the little guys. So they’ve already started out life at a disadvantage for their required job. And if that’s not bad enough, my immune system bullies them to death. Literally.

So when you hear me complain about a low count, it’s not the platelets I’m angry with—no, they’re fighting the good fight and they’re doing it with a super-small army and are up against the rest of my body. I love those little guys. They’re my friends. And so I’ve decided to write them a poem. (I hope my prose isn’t so bad that they in turn commit suicide!)

An ode to my platelets
by Just Frances

Oh platelets, my platelets
You circulate with grace
You plug, you clot, you scab
You are constantly under attack
By my over zealot immune system
But you fight to help spare my life

Oh platelets, my platelets
How I love you so
You are few in numbers
But still you rush
To fix my cuts and scrapes
Your dedication means the world to me

Wednesday, June 12, 2013

ITP Can Strike At Any Age

Meredith Prescott has just recently been diagnosed with ITP but in this short period of time, she has already experienced the good, the bad and the ugly. 

Prednisone, IVIG and Nplate have taken her for a life-changing ride on ITP's roller coaster but you know what? Meredith is a fighter with a beautiful positive attitude and she aims to win this battle...

My life as I once knew it consisted of being a carefree student at University of Maryland.  I was happy go lucky.  I always spent nights with friends out, smiling, laughing, and partying.  I spent my days going to class, studying, interning in Maryland all to develop a future career using my psychology major and business concentration.

I spent a semester abroad in Prague with friends and wanted to immerse myself into a new culture and experience life in another country.  However, all of this would soon change. Early November I noticed bruises all over my legs.  I immediately had a gut feeling something wasn't right.  I am very in-tune with my body and have dealt with medical issues in the past. I ALWAYS trust my gut and have a VERY strong intuition. I said something to one of my friends, but no one really thought much of it.  

I am about 105 pounds, so I am very thin from the beginning so I figured I bruised more easily than others and maybe because I was out partying I was bumping into things.  I decided to be safe to go to the health center to get a CBC. I even knew what a CBC (Complete Blood Count) was because I get them yearly.  They were unable to take me, so I decided to wait till Thanksgiving to see my primary care doctor.  She immediately took a blood test and said she would call me with the results.  

I drove back to college on Sunday essentially forgetting about the bruising as I enjoyed my thanksgiving break.  Ignorance is bliss in my world.  I am thankful I waited because I got to enjoy a month of what would be the last 4 weeks of my real college experience.  It wasn't until Monday morning after a long drive back from NJ, to find out that I had 15,000 platelets and had to come home immediately to see a hematologist or go to the ER.  The normal range is 150,000-450,000.  So which do I Choose?  I figured I would see a hematologist in my town of Livingston, NJ.  What is a platelet? I called my dad and he put me on the phone with a coworker that told me platelets clot your blood. You should have hundreds of thousands he stated.  I couldn't grasp how concerned the primary doctor sounded and how something like this could happen so suddenly. I came home nervous and thought how could this be, what do you mean? I felt fine.  I may have been tired, but I am so energetic and upbeat that it takes a lot to wear me down.  Granted, a college kid is always run down these days, so it’s hard to recall how tired I really felt.  

When I saw the hematologist, he drew about 15 viles of blood.  He looked at me and told me he thought I had ITP, which is called But he said he wasn’t sure and that a count so low could cause internal bleeding.  He wanted to rule out blood cancers, leukemia, lupus, and other serious diseases to make sure this wasn’t a secondary issue.  He told me ITP was a diagnosis of exclusion and relatively rare among someone my age.  My first course of treatment he prescribed was steroids and I begged him not to put me on them, since I had been on them in the past.  My count was critical, I knew there was a chance of internal bleeding, but I said I’d take the chance. I didn’t have the bleeding symptoms that most people suffer from, I simply had bruising and was in denial. I feared treatment and medication given my history of being so sensitive to any type of drugs and have severe allergies. I asked to to wait the week out and he told me I could.  I asked if there was anything else I could do. He explained to my parents that ITP is an autoimmune blood disorder where the platelets are the prime target. 

I prayed every night that week that my count would rise. Cancer? ITP? What world am I living in? How could this happen to me? The doctor thought maybe because I was younger, it could go away on its own as it often does in kids.  I had a virus in October and thought maybe he was right and time was in my favor. But time being in my favor was farthest from the truth. This was just the beginning of what would be the hardest days of my life.

I returned back to school to take finals, fearful, but courageous, as my parents were nervous.  I lived in a 14-person house with a lot of germs and everyone is out late with music playing at all hours of the night.  They wanted me to rest and get the best sleep I could and take care of myself so I could recover.  I got the phone call a week later that my count was now 12,000 and that I needed to start prednisone immediately.  I was devasted and immediately I started a hefty dose of 60mg of prednisone but responded in a week at 400,000! I thought this was finally over and he told me to taper off the drugs and thought this was a done deal.  I went out to dinner with one of my best friends and celebrated and thought, “Wow this is a Miracle.” Miracles happen, I thought, and this gave me great faith.  

I’ll never forget sitting in the doctors office and telling him, “Its okay I’ll be fine at least I’m not a football player, my whole life would be over”.  You can’t play contact sports with ITP, assuming you have a count like I did, and have to be very careful about bruising and bleeding, But soon I would realize my life would never be the same. I would mourn the life I once knew. Those are the exact words the gynecologist said to me, one of the most inspirational doctors I know.  I cannot believe how positive and naive I was and maybe I even jinxed it.  

I hadn't shed a tear until I started the prednisone. The whole time I was relatively calm and positive.  Once the prednisone started it was horrible. I had every side effect and I was shaking taking my exams, crying my eyes out, my hormones were completely out of whack, unable to sleep, skin changes, horrible anxiety, felt foggy, dizzy, and nauseous. I had no appetite on steroids, which is unique and ending up losing weight, which I couldn't exactly afford at 105 pounds. I also developed an eye infection and a sinus infection during this time.  I was in and out of the blood labs and doctors while taking finals.  I miraculously took four finals in two days, passed, and came home to depressing news. 

I asked to be healthy and take worse grades for the semester.  My luck works on opposite day and that’s exactly what happened, I managed A’s on my finals with no sleep, but my counts dropped.  My winter break began and my counts dropped as the prednisone was tapered.  I was supposed to go on a family vacation to Mexico, but I had to cancel that to focus on my health and go to the doctor. I was fine with that and just was excited to get better and hoping my count would rise.  There’s always more vacations in life and I wanted my brother and dad to go away, so my mom stayed home with me. 

I switched doctors to get another opinion in NYC at Cornell and she suggested IVIG.  I spent three days getting IVIG, which boosted my counts up to 200,000, but consisted of 5 hours of infusions each day.  I spent two days a week getting blood work and praying that maybe my body just needed one more boost.  Always stay positive right, but maybe I was too positive.  My birthday was coming up and college was approaching, as I would be going back on my birthday, January 22, for my final semester in college.   I would've gone back earlier, as all my friends were, but I was doing IVIG in the hospital those days with a 102 fever and a horrible migraine.  I had rashes even with the Benadryl, which they infused me with.  I now know they infused me too fast for my weight and that’s why I received such bad reactions, which frustrates me now.

Those hours were scary as I sat next to breast cancer patients.  I had never imagined at 21 I would be witnessing such sadness and fear.  The feeling was so strange.  I felt so out of place being the youngest one there and felt weird that I didn't have cancer but was sitting next to them.  I felt so horrible that they had cancer and offered them my magazines and loved to talk to anyone who wanted to.  The infusions were prepped with IV Benadryl, which actually left a mark on my arm.  The nurse quickly agreed with my claim of my sensitivity to drugs and couldn’t believe how she could actually see the line of Benadryl up my arm.  Benadryl made me so hyper but groggy, a weird sensation. I spent my infusions calling UMD to try and schedule my classes for the upcoming semester.  The doctors told me I should be relaxing and not to use my phone.  They were monitoring my blood pressure and all my vitals.  “But I need to graduate”, I said, and was trying ensure I would be off the waitlists for the semester, so I could finish in May.  

IVIG was a hell of an experience and I wondered when this nightmare would end. Would I have to do this again?   I drove down to UMD with anxiety as I wondered what it would be like to be at school with a serious illness.  How could I handle all the blood tests and side effects? What’s to come? How do I explain this to anyone? I didn’t want people to pity me, or feel bad, but I didn’t know how to approach a situation like this.  I didn’t want to be asked why I wasn’t around all the time because I knew I would be absent for things I once attended.  I didn’t want people asking me why I was always at the doctor? I didn’t know what to say because I thought anything I said, they wouldn’t get it.  How could they when the doctors don’t even get it? I couldn't express into words how I felt but now I know.  I felt trapped, angry, victimized and alone.

Why me?  Prior to the IVIG, the doctor almost made me miss it that week because she forgot to call me to tell me my count had dropped down to 12,000 that week.  Can I trust anyone?  I finally came back to school and LabCorp had lost my results when I got blood work down in College Park.  It was one nightmare after another.  As a college kid, I kept calling LabCorp and calling the doctor to find out my count.  She would sometimes not even return my phone calls.  I couldn’t believe it that my life was at stake and she didn’t even pick up the phone to call me. I never felt such anger towards a doctor and felt betrayed. It was impossible to be doing this long-distance.  I got so frustrated and anxious.  

There was nothing I wanted to celebrate on my birthday, I just wanted to be healthy. Nothing good came out of any day except for another doctor's visit or a realization that normalcy no longer existed as it once did for me.  As I said earlier, I have a gut so strong that I knew my count was dropping.  There were no bruises, but I felt it.  I felt tired but something just didn't feel right.  I was getting biweekly blood tests at LabCorp in College Park.  I befriended a nurse and she hugged me each time I left.  She asked me why I was still coming in so often and that I was the only patient that she had seen come that often since December.  I once again, had to frustratingly explain this.  I liked her and she told me she thought about me often after work.

My mom came down with me to speak to the dean a week into February to discuss my options as I did not know how I was going to manage being far away from home with a serious illness, missing classes, and did not know if I was looking at splenectomy, chemotherapy or what my options were at the time. It wasn't realistic to be traveling back and forth to NJ weekly or that often, nor healthy for my immune system.  It was all so new yet felt like I had been sick forever.  I felt alone and in the dark.  I didn't want to put the burden on anyone else but I needed my family.  I never once let any friend come with me to a blood test or a doctor, because I am independent and like to do things alone.  I didn’t want anyone else to have to feel sorry for me or make him or her go out of his or her way to do something.  I didn’t want people to view me any differently or be the “sick girl”.  I wanted to be the upbeat happy Meredith Prescott I always was and am today.  

The dean told me to go home and to take online classes and finish up the semester at my own pace.  I thank her very much as if it were not for her I would not have graduated.  The irony here is that her sister had ITP so she was beyond understanding, something I think about all the time.  She told me my health comes first and that I should be in a place close to my doctors and my family.  I knew she was right and knew that I needed to be home.  Even doctors had said over break maybe you should take a semester off.  Oncologists who had seen cancer patients assumed I was taking the semester closer to home, as I really hadn’t fully discussed the fact that I would be in College Park all semester. I had to see oncologists, as they see a lot of people with low platelets and were administering my IVIG.

The day I left University of Maryland, was probably one of the hardest.  I left college, a place that was home to me.  All the things I looked forward to would no longer be there.  Being in a house of 14 girls, partying, going to school, hanging with friends all the time, spring break, and all the great things about college no longer would exist for me. They were cut 6 months short.  The day I left UMD I went to get a blood test, my count was down to 9,000.  It was ironic yet predictable on my end that my count had dropped.  I was thankful I was home and knew I made the right decision and stuck with my gut.  My old doctor referred me to a specialist in NYC that said he knew more about this and she felt more comfortable placing me into his hands.  When my parents asked, “what would you do if this were your daughter”, she could not give me an answer. I knew she wasn’t the right doctor for me and did not care for her.

I came across a great doctor and ever since then have done IVIG and Nplate, an orphan drug, which means a drug that is rarely used.  IVIG was once again rough but I knew what to expect.  

So far I have nplate injections and blood tests weekly and it is working well for me. I have fewer side effects compared to steroids, but it is all a lot to take in.  Some doctors told me I am too young to be on orphan drugs because we do not know the long-term side effects.  Some weeks they are 30, 60, 100, it all depends.  You wonder why some weeks they are higher even on the same dosage and why some weeks are lower.  There are no explanations.  There are no answers.  I pray everyday that I can eventually can stop the drugs and be in remission, which is a count above 150,000 without drugs.  I spend everyday checking twice a day for bruising and bleeding. I contacted all my doctors to inform them about ITP because they all have to communicate, which is the hardest part on my end.  To get a normal prescription for anything, it has to be approved by my doctor.  Everything that was so simple became so much more complex.  

Ever since ITP, I have so many more issues, which I attribute to the drugs but mostly steroids.  I have higher cholesterol, I have eye infections, and skin issues which all happened while I was on the steroids.  I am the only person that probably loses weight from steroids, as my body metabolizes it very different than others.  This happened to me the last time I took steroids and I swore I would never take them again and never will.  Many people with ITP say the same thing, predisone is the devil.

Although it is very scary to have no control over your body, I am managing to live with it.  It takes a lot of energy to go through something like this and the hardest part is the lack of awareness and the life change.  No one gets it.  People ask so when will you be better? What’s the time frame? Are you all better? How do you feel?  Do you have cancer? But you look fine?  Thanks to those who think I look fine, as I think I’m rather on the light side, haha.  I wish I knew, I wish I had an exact date of when my remission would begin and when my counts would sky rocket.  

Life isn't that simple or certain. I spent numerous days asking myself, why me? I’m a good person.  People in town say but you’re so young.  It’s not fair.  I know that all too well. I thought, what did I do to deserve this?  Nothing.  

Good things happen to bad people and I would say the emotional adjustment has been the hardest part.  It came at the worst time in my life, not that it should have ever come.  I had to figure out what I wanted to do with my life and this disease came at that point where the job search was crucial.  People were applying for jobs and interviewing, while I was trying to pass school and take care of my health.  I didn't want to fall behind everything I had worked so hard for and wanted to keep up with everyone else.  

On a whim, I applied to graduate school, Fordham University, as this was the only top-ranked school that I would be able to make the deadline of May 1st to be a social worker.  I wanted to help other people.  I want to make a difference because if it can take simply two seconds of someone’s day to help someone else then how could you not do it?  How much does it take to put a smile on someone’s face? I have always loved helping people and realized this was my calling.  Where is the empathy from doctors? Do they have bedside manners? While I know PDSA has done an amazing job, as a whole there is no support for patients with ITP in local communities.  PDSA is the sole organization that supports ITP.

The challenges don’t stop, yet I won’t stop fighting.  I am not a quitter and I am determined to find a way to get off treatment and maintain “normalcy”. While this disease doesn't always end for some, I hope it does for as many as possible including myself.  I am planning a walk in my local community because I think people undermine the amount that ITP fighters go through and what is like to live with it.  Many doctors don’t realize the extent it impacts your life, as they aren't going through it. They just give you medication and check your counts.  I refuse to live with this and I hope by planning this walk I can raise awareness and funding for this cause.  At the year mark, I will deal with the spleen option, but I know the risks with that.  Living without a spleen puts your whole life at risk for other diseases and illnesses.  You live with a compromised immune system with no guarantee your count will rise.  Only 60% of patients with ITP that remove their spleen are in remission.  Those other ones are back to the drugs, and even the ones who are in remission, it can come back years after your spleen is removed.

Nothing in life is a guarantee and everything comes at a cost.  The only positive thing that has come of us this is realizing who is important to you, what is important to you, and that health comes above all.  It’s hard for me to think I really learned that after being diagnosed with ITP because I think I knew that before, but maybe I have. Maybe there isn’t a positive except that I was accepted to Fordham University, the only graduate school I applied to, which was a decision I made while going through ITP.  

What’s positive and certain is I will make an amazing social worker, especially going through this.  I know empathy at its finest and always have.  I manage to smile and laugh every single day and let myself cry and vent once in a while, or whenever I need to.  I have an amazing family and support system, which keeps me going.  My best friends helped get me through the roughest days.  They are by my side cheering me on and excited to help plan the walk. Before November, I could count on my hands how many times I cried, as I am a very happy and positive person.  I would joke about not being affectionate and how I rarely get upset.  As most of my friends would attest to I never got stressed about the little things, especially those who witnessed me in college. I am very easygoing and never stressed about a grade or what the plan was.  I just wanted to have fun and be happy.  I knew the small things in life didn’t matter.  It sucks to learn it when you feel like you know it.  

However, I still am happy just in a different way for now and hope for an exciting and healthy future and a high count.  I know it will be exciting, as it is what I make it but I do know I face challenges ahead.  For those who are reading this who need a helping hand, you can tell me your story and I would love to hear it and be there for you. Life isn’t easy and the uncertainty is the hardest part.  Finding a way to control the things you can is key! If you pick things you can control that is a great start, but also knowing that life throws you shit and sometimes you just have to adjust. 

I have realized most, I am my own therapist and know myself best.  No therapist can change your thoughts, only you can, and only you know how painful this is, the toll it takes on you emotionally and physically. Although each ITP patient is different emotionally and physically, we all have the same ground of “uncertainty”.  Knowing what your up for and what you can handle is fine and everyone different, the balls in your court.

To my ITP fellows, remember most importantly you have control over what goes into your body.  Doctors push things for good intentions, or so I would hope, but remember that it is your choice of treatment to pick and don’t let them sway you one way or another without researching.  Research each treatment and find out what you think would work best when given your options.  I know there are no good options for ITP and I am determined to find one.

Lastly, you have to be your own advocate and know that you are the most influential person in this.  You know your body best and stick to your gut and intuition as that always leads me in making the right decisions. Balancing everything takes time. It all takes time and this disease is a horrible waiting game but try riding the rollercoaster upward and not downwards.  Pride yourself for living each day with a smile as it isn’t so easy and know that if you ever want to talk about it, especially as a college kid, I would love to help if any way.

If you are in college or can relate contact me because I would love to speak with you. My email is