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 27^th,. 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 11^th. 

            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.

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.

One.

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.

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!!!