Meredith Prescott has written 

a letter I think we can all 

relate to. We have all felt 

her anger, frustration and 

determination in dealing with

our mutual foe....ITP

Take a look at what she has 

to say


An Open Letter to ITP:

Dear ITP,

         When diagnosed with you 17 months ago at just 21 years old, I had no idea what was ahead of me.  I had no idea what you were capable of.  Truth be told, I never knew you even existed.  

         When I found out you were a rare blood disorder that destroyed my platelets, the cells that clot my blood, I was angry.  I wanted to destroy you.  I didn’t get how you could appear out of nowhere and why you targeted me.  You made me look fine on the outside but not on the inside. How could you be so fake?

         I began to learn with much research and doctor’s visits that there is no rhyme or reason why I got you.  You are not genetic and you can strike at any age.  You can last forever or you can go away any day.  I guess you just really are that unpredictable.

            It was like that time you had me fooled.  It was the first few weeks of you and I, and I was doing really well on a horrid drug called prednisone.  After all the cruel side effects, I was told it was worth it because it was raising my counts and that It would be over when I finished it. But then you hit full force and my platelets crashed.  You caused hours of infusions, fevers, blood draws and hospital stays. You have always been so painful and deceiving.

                  Sometimes you’re pretty scary.  You make me fear each and every time I see a bruise that I may be internally bleeding.  You’ve make me weigh the options of surgery and chemo.  You make me realize that there’s a chance I will undergo a splenectomy in the near future. You make me scared when my counts are low that I will have a brain hemorrhage and not wake up in the morning.

         You put tears in my eyes when I hear about those who have lost their battle. You have put a burden on my family and friends that should never have been placed.  You’ve destroyed children’s childhoods and made them grow up way faster then they ever should have. You’ve taken lives from beautiful people. You should NEVER exist.

         So ITP- you’ve made everything in my life 100 times harder then it ever should be.  You made me leave University of Maryland, my final semester in college.  You made me miss out what could’ve been some of the best days of my life. You make doctors draw countless viles of blood with painful needles each and every week.  You’ve made me wait endless hours at doctor’s offices shaking with the anticipation to hear my platelet count. You have made me try toxic treatments I wish I never had to. You have made me so exhausted even when I should be energetic. You make me live in the unknown.      

         But ITP, I personally must thank you.  You make me live my life with absolutely no regrets. If I didn’t live my life to the fullest from the beginning, I sure as hell do now.  You make me motivated to achieve things I never thought I was capable of. You have taught me things in my life that have made me wise beyond my years, that I only wish I could instill in others.  You let me experience my first heartbreak, which was you.  You have made me want to help anyone and everyone I can that has you.  You have opened the door to friendships I have with those who have you, which I cherish because they are some of the most unbelievable people I have ever known.

I am planning a second fundraiser this June with other fighters to rid you of this world, because no one should ever have to endure you. You are that destructive.

I know I can’t say goodbye to you yet, but you have made me so strong that I know I will beat you. You’ll just have to wait and see.

        

Love,

Your fighter

Meredith has organized her second annual 5K run/walk in

association with PDSA to raise money for ITP research. 

Sunday, June 8, 2014

The Livingston Oval ~ 30 Robert H Harp Drive ~ Livingston, NJ

12:00pm - 3:00pm

I know many of you are not in the Livingston NJ area but 

you can still show your support and follow her progress by 

clicking this link:

http://pdsa.donorpages.com/PumpItUpNJ2014/MeredithPrescott/

Meredith's goal is to raise $20,000 and she's already got 

pledges for over $5000!!! 

You can also participate in her Facebook event:

https://www.facebook.com/events/261358180703865/

Let's show Meredith our appreciation by supporting her 5K Run/Walk. Go for it, girl!!!!!

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.

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!!!

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

A Voice for ITPers

Dale Paynter is our special guest today. He has been very instrumental in getting the word out about ITP.

Dale started an ITP Support Group for the Toronto area in Canada and has done a number of interviews with the local media. He has also participated in the PDSA conferences here in the USA.

Hats off to this wonderful man and all the great work  he has done for all ITPers.

I guess it is my chance to add my mild little story to Greta’s wonderful blog – should be doing something while we are sitting here at the Hospital getting IVIg. Those who know me agree I can ramble on, so you might need to grab a drink and/or a snack to get through this….sorry.

My low platelet condition was discovered in the spring 2010 in an annual company medical (70 at the time).  My numbers continued to drop into the 30s and I was referred to a hematologist that same fall. We tried Dexamethasone to see if that would raise my numbers to no avail. She then conducted bone marrow tests and specifically found I have a protein clone that is attacking my platelets.  It is a bit unsettling when the first time you hear of a rare condition, you are told you have it. A great deal of time was spent scouring the internet to find absolutely everything about ITP.

Before my referral, I did a lot of thinking about a specific cause of my numbers. Looking back at old medical records showed 400 in 2007 and 150 in 2009. I had a bruising from a hockey injury about the same time as my 2010 medical – was this a cause or a symptom?  I had a large weight loss three years ago; did this trigger something?  I was a chronic worrier - is ITP stress induced? I have done a lot of youth volunteering with some tasks requiring long, late hours at certain times of year – did I burn myself out?   I may never know if it is one thing or a combination of things; many of us never will.

My numbers were somewhat stable in the 30 range without treatment, but I was concerned about an upcoming winter golf vacation in South Carolina with my 20 year old son. To be in another country (even the United States) with a different medical system was a concern should something happen. My hematologist suggested that we try IVIg to see how that would work, even short term. This was covered here in Canada, so we gave it a try. Four days put me back over 350 – did we the find the silver bullet first time? As we all know, IVIg is only temporary, but still we had something that worked if we needed.  That took so much off of my mind.

My haematologist has suggested that I would be a good candidate for a splenectomy, but that talk has been less recently.  I visited a friend who is a local naturopath about a year ago - we found a number of food allergies and also diagnosed Candida.  We successfully conducted several treatments to eliminate these, but this did not improve my platelet levels.

Over the past 20 months, I have had CBCs every two to three weeks, and IVIg for two mornings every four to six weeks when my numbers have been below 30 (lowest test ever 15). I have zero side effects from the treatments, and get really strange looks from all of the nurses when I say I am heading back to work.  Sometimes I wonder about trying some of the other treatments, but many are not available, approved or covered here in Canada.  We will be working on changing those kind of things up over time.

There are some things that we can obviously no longer do (play hockey) and we need to pay attention to tasks at work and home, but we are still active. I am volunteering with kids hockey (managing…off the ice), biking in the summer and curling in the winter (it is Canada).  I own golf clubs, but they aren’t very good.

-----------------------------

Back when I was first diagnosed two years ago, my hematologist gave me a small brochure that has ultimately changed everything and given me direction now that my sons are grown and off to university.  Many of you know of my deepening interest and involvement with the Platelet Disorder Support Association in the US.  Without being on a soapbox here, I can’t say enough about how PDSA and the people there have helped many of us with ITP.  My first conference in Boston in 2011 was magic. It was just so great to for the first time meet and talk with people live who have the same condition. 

I now facilitate one of two PDSA support groups in Canada, drawing attendees from all over the Greater Toronto Area. I have completed television, video and newspaper interviews in Canada and the US, as well as had the opportunity to speak at the 2012 Conference in Denver. My sights are set on establishing a ‘new’ regional fundraising event, and getting charitable donation status here in Canada.

Social networking has been a godsend in learning how many others really have this, and how other people have been treated and how they have responded, favourably or unfavourably.  I can’t imagine how difficult it would have been to be alone with this. I can’t say thank you enough to my worldwide ITP family.

Once again this is not about me. I have been able to manage all of this; I am fortunate that I have few (if any) of the other physical symptoms or medication requirements of a great number of the people I have met worldwide who have ITP.  It is SO important to get our word out, so our numbers know they are anything but alone.

My wife and I consider it lucky to have found this when we did and that I am being looked after before it could have been much worse or even too late. It has corrected some priorities.  

See you in Washington in July.

DP