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 meredithprescott2@gmail.com

Elaine Twohig Odriscoll shared a beautiful poem she wrote in the Facebook group,
ITP and Me.

She gave me permission to post here on our blog so everyone can read and appreciate the feeling she shares.

Today I will wake up into the unknown,

Everyday's a blessing but everyday I feel alone,

I wonder what tomorrow will bring

I pray it will be good,

Will I be bruise free or will there be Blood?                  

I know I have I.T.P but what will others think,

Even though I stand so tall

I feel so ready to sink,

I'm really tired now

I think I will lie down,

But as I look in the mirror

All I see is my Hospital Gown.

The Dream is over, I'm not free as a Bird

I'm hooked to my life saver Bottle after Bottle

And this is now my Third,

I'm in my second home, now a hospital suite for me

All the people in and out as busy as can be,

But I have things to do, my home, my job, my kids,

Doesn't I.T.P know that I have no time for this?

My treatment is over and I'm drained from day to day

I will feel much better in time or so the doctors say.

I want to run around and come and go as i please,

But I.T.P has other plans and it has me on my knees.

I can pray for a cure or a magic wand if so

I can always pray for strength and let ITP go.

So if you ever see me, don't ask me how I feel

Just know my battle is very Hard and very, very Real.

This is a very interesting article from Prevent Disease.com. http://preventdisease.com/news/13/030713_Scientists-Officially-Link-Processed-Foods-To-Autoimmune-Disease.shtml

I thought some of you folks might want to comment on this....

March 7, 2013 by APRIL McCARTHY

Scientists Officially Link Processed Foods To Autoimmune Disease

The modern diet of processed foods, takeaways and microwave meals could be to blame for a sharp increase in autoimmune diseases such as multiple sclerosis, including alopecia, asthma and eczema.

A team of scientists from Yale University in the U.S and the University of Erlangen-Nuremberg, in Germany, say junk food diets could be partly to blame.

'This study is the first to indicate that excess refined and processed salt may be one of the environmental factors driving the increased incidence of autoimmune diseases,' they said.

Junk foods at fast food restaurants as well as processed foods at grocery retailers represent the largest sources of sodium intake from refined salts.

The Canadian Medical Association Journal sent out an international team of researchers to compare the salt content of 2,124 items from fast food establishments such as Burger King, Domino's Pizza, Kentucky Fried Chicken, McDonald's, Pizza Hut and Subway. They found that the average salt content varied between companies and between the same products sold in different countries.

U.S. fast foods are often more than twice as salt-laden as those of other countries. While government-led public health campaigns and legislation efforts have reduced refined salt levels in many countries, the U.S. government has been reluctant to press the issue. That’s left fast-food companies free to go salt crazy, says Norm Campbell, M.D., one of the study authors and a blood-pressure specialist at the University of Calgary.

Many low-fat foods rely on salt--and lots of it--for their flavor. One packet of KFC’s Marzetti Light Italian Dressing might only have 15 calories and 0.5 grams fat, but it also has 510 mg sodium--about 1.5 times as much as one Original Recipe chicken drumstick. (Feel like you’re having too much of a good thing? You probably are.

Bread is the No. 1 source of refined salt consumption in the American diet, according to the Centers for Disease Control and Prevention. Just one 6-inch Roasted Garlic loaf from Subway--just the bread, no meat, no cheeses, no nothing--has 1,260 mg sodium, about as much as 14 strips of bacon.

How Refined Salt Causes Autoimmune Disease

The team from Yale University studied the role of T helper cells in the body. These activate and 'help' other cells to fight dangerous pathogens such as bacteria or viruses and battle infections.

Previous research suggests that a subset of these cells - known as Th17 cells - also play an important role in the development of autoimmune diseases. 

In the latest study, scientists discovered that exposing these cells in a lab to a table salt solution made them act more 'aggressively.'

They found that mice fed a diet high in refined salts saw a dramatic increase in the number of Th17 cells in their nervous systems that promoted inflammation.

They were also more likely to develop a severe form of a disease associated with multiple sclerosis in humans.

The scientists then conducted a closer examination of these effects at a molecular level.

Laboratory tests revealed that salt exposure increased the levels of cytokines released by Th17 cells 10 times more than usual. Cytokines are proteins used to pass messages between cells.

Study co-author Ralf Linker, from the University of Erlangen-Nuremberg, said: 'These findings are an important contribution to the understanding of multiple sclerosis and may offer new targets for a better treatment of the disease, for which at present there is no cure.'

It develops when the immune system mistakes the myelin that surrounds the nerve fibres in the brain and spinal cord for a foreign body. 

It strips the myelin off the nerves fibres, which disrupts messages passed between the brain and body causing problems with speech, vision and balance.

Another of the study's authors, Professor David Hafler, from Yale University, said that nature had clearly not intended for the immune system to attack its host body, so he expected that an external factor was playing a part.

He said: 'These are not diseases of bad genes alone or diseases caused by the environment, but diseases of a bad interaction between genes and the environment.

'Humans were genetically selected for conditions in sub-Saharan Africa, where there was no salt. It's one of the reasons that having a particular gene may make African Americans much more sensitive to salt.

'Today, Western diets all have high salt content and that has led to increase in hypertension and perhaps autoimmune disease as well.'

The team next plan to study the role that Th17 cells play in autoimmune conditions that affect the skin.

'It would be interesting to find out if patients with psoriasis can alleviate their symptoms by reducing their salt intake,' they said.

'However, the development of autoimmune diseases is a very complex process which depends on many genetic and environmental factors.'

Stick to Good Salts

Refined, processed and bleached salts are the problem. Salt is critical to our health and is the most readily available nonmetallic mineral in the world. Our bodies are not designed to processed refined sodium chloride since it has no nutritional value. However, when a salt is filled with dozens of minerals such as in rose-coloured crystals of Himalayan rock salt or the grey texture of Celtic salt, our bodies benefit tremendously for their incorporation into our diet.

"These mineral salts are identical to the elements of which our bodies have been built and were originally found in the primal ocean from where life originated," argues Dr Barbara Hendel, researcher and co-author of Water & Salt, The Essence of Life. "We have salty tears and salty perspiration. The chemical and mineral composition of our blood and body fluids are similar to sea water. From the beginning of life, as unborn babies, we are encased in a sack of salty fluid."

"In water, salt dissolves into mineral ions," explains Dr Hendel. "These conduct electrical nerve impulses that drive muscle movement and thought processes. Just the simple act of drinking a glass of water requires millions of instructions that come from mineral ions. They're also needed to balance PH levels in the body."

Mineral salts, she says, are healthy because they give your body the variety of mineral ions needed to balance its functions, remain healthy and heal. These healing properties have long been recognised in central Europe. At Wieliczka in Poland, a hospital has been carved in a salt mountain. Asthmatics and patients with lung disease and allergies find that breathing air in the saline underground chambers helps improve symptoms in 90 per cent of cases.

Dr Hendel believes too few minerals, rather than too much salt, may be to blame for health problems. It's a view that is echoed by other academics such as David McCarron, of Oregon Health Sciences University in the US.

He says salt has always been part of the human diet, but what has changed is the mineral content of our food. Instead of eating food high in minerals, such as nuts, fruit and vegetables, people are filling themselves up with "mineral empty" processed food and fizzy drinks.

Study Source:
This is the result of a study conducted by Dr. Markus Kleinewietfeld, Prof. David Hafler (both Yale University, New Haven and the Broad Institute of the Massachusetts Institute of Technology, MIT, and Harvard University, USA), PD Dr. Ralf Linker (Dept. of Neurology, University Hospital Erlangen), Professor Jens Titze (Vanderbilt University and Friedrich-Alexander-Universitat Erlangen-Nurnberg, FAU, University of Erlangen-Nuremberg) and Professor Dominik N. Muller (Experimental and Clinical Research Center, ECRC, a joint cooperation between the Max-Delbruck Center for Molecular Medicine, MDC, Berlin, and the Charite -- Universitatsmedizin Berlin and FAU) (Nature, doi:http://dx.doi.org/10.1038/nature11868)*. In autoimmune diseases, the immune system attacks healthy tissue instead of fighting pathogens.

April McCarthy is a community journalist playing an active role reporting and analyzing world events to advance our health and eco-friendly initiatives.

Did You Wear Your Purple Yesterday?

Anthony Heard sporting his purple tie...

Yesterday was Rare Disease Day. Did you wear your purple to show support for ITP, one of the many rare diseases that plague our world?

Anthony Heard has been posting pictures on the ITP Foundation Facebook page. Take a look and see how ITPers have been sporting their purple.
https://www.facebook.com/pages/ITP-Support-Association/195007237228999

In the United States, sometimes people with rare diseases do not have the funds to obtain the treatments they need. There is an organization called NORD (National Organization for Rare Disorders) that may be able to help.

The following is some information from the NORD Website (http://www.rarediseases.org)

WHAT IS A RARE DISORDER?

Any disease affecting fewer than 200,000 Americans is considered rare. There are nearly 7,000 such diseases affecting nearly 30 million Americans. NORD is here to represent all patients and families in the U.S. affected by rare diseases.

WHAT IS A RARE DISORDER?

Any disease affecting fewer than 200,000 Americans is considered rare. There are nearly 7,000 such diseases affecting nearly 30 million Americans. NORD is here to represent all patients and families in the U.S. affected by rare diseases.

NORD PROGRAMS AND SERVICES

NORD provides information for patients and families, mentoring for patient organizations, advocacy for the rare disease community, research grants, and patient assistance programs.

MEDICAL ASSISTANCE PROGRAMS

http://www.rarediseases.org/patients-and-families/patient-assistance

NORD partners with pharmaceutical and biotechnology companies to ensure that certain vital medications are available to uninsured or under-insured individuals. NORD’s programs have set the standard for fairness, equity, and unbiased eligibility and earned high marks from patient communities, pharmaceutical companies, healthcare professionals, government officials, and the public.

NORD also administers co-pay assistance programs for people who can’t afford their insurance co-pays; early access programs that, following FDA guidelines, allow patients with serious or life-threatening diseases to access investigational products under certain conditions; and travel assistance programs, since patients with rare diseases often must travel great distances to participate in clinical trials.

Rare Disease Day

Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year.  In 2013, it will be observed on February 28th.

There are over 6000 rare diseases of which ITP is one of them. Details of how you can get involved with the many events taking place to mark the annual RARE DISEASE DAY  are available at http://www.rarediseaseday.org/article/get-involved

Another link for the folks in the US is

 http://rarediseaseday.us/

There are so many things that you can do to help promote the day, attend an event or just display the RARE DISEASE DAY poster or logo to raise awareness.

Video http://www.rarediseaseday.org/rare-disorders-solidarity-has-no-border

The sixth Rare Disease Day takes place on 28 February 2013. This year's slogan "Rare Disorders without Borders" emphasizes the need for international cooperation. Join an activity taking place near you to demonstrate global solidarity. Let's go beyond borders for rare disorders. Show your solidarity today!

It's Movie Day

Thanks to Arnold Schwartz for this picture

I want to apologize for not posting anything for the past couple of weeks. I am back up to speed now but I do need some help.

For the folks new to this blog, we want to hear your ITP story. If you look through the archives, there are some great stories submitted by ITPers. Please add yours to it.  

Also, if you see articles that would be of interest to the blog viewers, send me a link.  
Email your stories or links to: greta799(at)yahoo(dot)com


Today is movie day.....

Keith Hart has produced a video that relates his ITP story. His sense of humor in doing a parody of the song, You've Lost That Loving Feeling  makes the viewer laugh, and also think about our own battles with ITP. Keith made the video to raise awareness of ITP and he did an excellent job of showing what this blood disorder can do to its victims. Take a look:
http://www.youtube.com/watch?v=j0VagCjU1IQ 

The members of the Facebook group, ITP and ME had a brainstorming session one day and came up with a wonderful idea! Under the leadership of Elaine Twohig Odriscoll the group made a video about ITP. The idea behind this project was to spread the word about this terrible blood disorder to the whole world.

The video features members of the ITP and ME group and sends out a message that should make everyone think about ITP. Many of you have seen this already but it is worth a second look.

Take a look ... http://www.youtube.com/watch?v=IK5slMK3_Pg&feature=youtu.be..So

Several videos from PDSA, stories from ITPers and other information aboutITP.

 http://www.youtube.com/user/PDSAorg

2013 - What will it bring....
           More bleeding, bruising,                   treatments or remission? 

Have you come to terms with ITP? Has it become just a part of your life now and not so scary anymore or do you still worry about your platelet count? 

Can we ever come to terms with ITP? Do you have days when dealing with ITP, family, friends, work, etc. seem to overwhelm you
like it did with this person.....

It is such a harsh reality to see how our families just don't get it. They see it all....the vomiting, the headaches, all of it and yet some of them just don't understand. My sisters and brother don't even call anymore because they think all I want is money. I am expected to listen to all of their complaints and problems and pray for them but where are they now? Where are they when I need them? I think it is harder on my kids because my husband and I both are dealing with illness. The difference with my husband is his basically controlled with pills. He had the stroke because he didn't listen and yet I did nothing to get this crap and somehow I am over reacting when my teeth are bleeding or I have bruising everywhere. Both of us can't get private insurance because they don't cover ITP (unless you had prior coverage and were diagnosed while covered), so we have to rely on medicaid share of cost (you have to prove that you need medical care). I was told today that when my son turns 18 we will lose that coverage too. I have my husband telling me that I am worrying over nothing. NOTHING!!! Maybe to him it's nothing but to me my life now depends on getting these shots. I missed three weeks and went down to 19,000. I think it hurts more when your husband and children don't seem to understand. Four years of this....I think it is getting to be too much for them. I think they just want it to stop but it does not look like that is going to happen. I have faith and I pray and I push myself to believe but today, I am just having a bad day. We can't be strong 24/7/365 like everyone expects us to.

What are your thoughts? Leave a comment and let us know how you feel. Is it possible to ever come to terms with ITP?