A Patient Research Study about ITP

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I recently received an email from Partners, looking for ITP patients to participate in a study about treatments and experiences living with ITP. 

low Platelets, platelets low, platelet count, what is itp, low platelet counts, itp blood, itp platelets, itp blood disease, itp autoimmune disease, itp blogs, blogs about itp, bleeding disorderPartners, is a consulting firm located in Boston, Massachusetts (USA) working to understand people’s experiences living with Immune Thrombocytopenic Purpura (ITP) and your experiences with IVIG, SCIG, and TPE treatments. Your input will help focus research efforts to areas where they will have the greatest impact.

The goal of the study is to better understand your experiences in living with ITP and your treatment experiences with Intravenous Immunoglobulin (IVIG), subcutaneous immunoglobulin (SCIG), and/or plasma exchange (TPE, plasmapheresis).  Your responses will directly help our client – a healthcare company – make more informed decisions.

If you have had any of the above treatments and are interested in being compensated for your time, please contact Ben Shedlock  via email at BEN.SHEDLOCK@rarepatientvoice.com 

ITP Patient Market Research Flyer

ITP on Capitol Hill, by Rare Candace

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People with itp, famous people with itp, living with itp, celebrities with itp. A Guest Post by CANDACE

from RARECANDACE

This past February, I had the opportunity to advocate on behalf of ITP patients during Rare Disease Week. I traveled to Washington DC to learn about the 21st Century Cures Initiative, now House Bill 6. The legislation provides a lot of groundbreaking developments for the rare disease community, especially for those of us with Immune Thrombocytopenia. I’m a firm believer that certain things in our lives occur to inspire us to embark on great journeys. This trip was my wakeup call. I learned about a bill that would eventually be included into 21st Century Cures.

It was called the OPEN Act or Orphan Product Extensions Now Accelerating Cures and Treatments. The goal of the bill was to allow FDA-approved drugs to be repurposed for rare disease patients. This struck me, since I used Rituxan to control ITP. It worked and I have been in remission since December. Using Rituxan has saved my life and allowed me to build my “new normal” as a rare disease patient.

The OPEN Act would end “off-label” use of Rituxan for ITP patients in the US and allow more people to have access to the drug. I have met many ITP patients who were denied Rituxan by their insurance company because it was off-label and thus very, very expensive. I met with the Congressman Bilirakis who is from my home state of Florida. He introduced the OPEN Act in the Energy and Commerce Subcommittee and is a wonderful friend of the ITP community.

I told him I was living proof his bill could save and improve the lives of ITP and rare disease patients. The Congressman and his amazing staff have used my experience to push Congress to include the OPEN Act into 21st Century Cures, and were successful. None of this would have been possible without their help.

After the July 4th holiday, it is anticipated that the House of Representatives will vote on the 21st Century Cures bill. We believe it will pass with tremendous support from both parties. Our next challenge is encouraging the Senate to act with the same urgency. Time is running out and ITP patients need to have access to every treatment option available. Orrin Hatch and Amy Klobuchar furthering bi-partisan support of our efforts introduced the OPEN Act in the Senate at the end of May.

I am in contact with legislatives aides that are working diligently to get the Senate on a fast track. There is a lot of work that goes on behind the scenes and the Congressional staffers don’t receive a lot of credit. So far, I have had nothing but positive experiences working and advocating with them. They are interested in seeing that the ITP community benefits from this legislation.

Many ITP patients in other nations are probably shocked by this, and rightfully so. It is unfathomable to think that the United States would prevent rare disease patients with a life threatening blood disorder from obtaining a medication that may put their disease into a temporary remission. While Rituxan doesn’t work for all ITP patients, and doctors don’t know everything about the disease, every ITP patient has the right to try.

This is why I fight for the ITP community, I believe every ITP patient and rare disease warrior deserves the same chance I had. I also hope to have this legislation on President Obama’s desk before I need to use Rituxan again. My safe zone of 9 months is rapidly approaching, right around the time I begin law school. I am terrified to think of what will happen to me if my platelets start to fall again and I cannot have the same treatment. That’s why there is no time to waste in pushing our leaders to get this bill passed.

How to Heal A Bruise, An ITP Book

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For Patients and Parents living with ITP,

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There is so much information available about the medical problems of immune thrombocytopenia.  Written by doctors and professionals, it’s difficult to read and even harder to decipher. Medical journals and scientific papers never address the questions you actually want answers to – What is it like to live with ITP?  How can I still live my life?  What will it feel like now that I have ITP?

HOW TO HEAL A BRUISE was inspired by Meghan Brewster’s most popular ITP articles.

 HOW TO HEAL A BRUISE includes stories from Meghan’s ITP Journey, some of the latest ITP research and advice for living a life with ITP.  This book is comprehensive yet easy read; from a person who actually has ITP.

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About the Author, Meghan Brewster

meghan brewster, author, how to heal a bruise, itp blood disorderMeg was diagnosed with immune thrombocytopenia when she was 22 years old.  She struggled to read dense medical journals and scholarly articles to learn more about her ITP.  What was missing from the ITP conversation was information from other patients, about what immune thrombocytopenia was really like.  

In 2012, Meg set up ITPANDME.  Three years later, it’s one of the largest ITP blogs in the world.  Meg has been writing about ITP for more than 6 years, has heard hundreds of patient stories and answered many questions about ITP life from patients and parents.

HOW TO HEAL A BRUISE is an honest account of her journey with ITP, as well as practical advice for living with ITP and information from some of her most popular articles.

This book takes you through the stages of ITP from coming to terms with your diagnosis to finally accepting and thriving with ITP, what to expect while living with ITP and how to make sure it doesn’t take over your life.  An honest and informative account of living with an autoimmune disease.

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Praise for How to Heal a Bruise

The book includes lots of ITP information such as, the science, history, tips and guides, alongside strong emotional support. It is now my own ITP Bible! I could not recommend it more highly! FULL REVIEW HERE from Katie Meloy

Beyond being a book documenting scientific and medical information, is the personal experience of Megan Brewster after seven years of living with this blood disorder and is enriched in fourteen chapters…I didn’t know what to expect on How To Heal A Bruise, then simply I couldn’t stop reading.  FULL REVIEW HERE from Laura

‘My partner and I absolutely love your blog and find many of your post’s to be just what we are looking for.’ Andy USA

‘Thank you for your thoughts…they’ve helped me with finding perspective in our reality.’ Jenny Australia

‘Love the way you write.  Meg, you made me chuckle.’ Bron Australia

‘Thank you for writing this, it will surely help the newbies.’ Padma, India

Features

  • The History of Immune Thrombocytopenia.
  • Practical Diet and Lifestyle advice.
  • Pregnancy and Babies with ITP
  • Advice on Natural Therapies and alternative medicine.
  • Possible Isolation and Depression from an ITP diagnosis.
  • Covering up Bruises, tips for healing and hiding bruises.
  • First aid tips and tricks for around the home.
  • ITP fears and how to overcome them.
  • A Huge list of References – Meg’s favourite blogs, books and ITP Resources.

The Biggest Impact ITP has on it’s Patients?

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Feature image from LAURACONRAD

So it’s been a quiet little week at our house.  No news, nothing is bothering me.  It has been a strange empty week where I found myself reading articles I had put aside to read months ago.

Many of them where detailed breakdowns of microscopic bodily functions.  a few others where dense incomprehensible nonsense, and then I found this… ‘Impact of CHRONIC IMMUNE Thrombocytopenic Purpura on health related quality of life.’  These are the results from a collection of studies and focus groups from 2008…

While the paper acknowledges that platelet counts are of the utmost importance to patients and treating doctors, as they are often the only indication used to measure the success of the treatments, this paper attempts to discuss the symptoms which are not always considered.  This paper asks the question, ‘What of your quality of life?’

Yes it’s a little old, (what ITP research isn’t?)  The paper is from 2008.  Can you believe that is 7 years ago?  A life time ago in terms of medical research.  Below are stolen chunks of the literature, the results of the survey and study.

Continue reading

ITP – Running in the Family

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Many doctors will quickly dismiss any likelihood of passing ITP from mother to child during pregnancy.  That is because it is incredibly unlikely.  It is rare for an ITP mother to give birth to an ITP baby.  And yet, in many cases you have probably heard that you have a ‘genetic predisposition’ to the Autoimmune disorder.  Where do our genetics come from again?  Oh that’s right.  Our parents.  

Firstly, I want to let you know that my mother and I both see the same Haematologist; ITP, autoimmune haemolytic anemia, Hughes Syndrome, Lupus Antibodies, SLE and now Raynard’s Phenomenon.  But I have three other siblings.  So if I got ITP from my mum, then we would all have ITP right?

The other day I read the story of Beckie Mostello whom after battling ITP herself, found out her 10 year old daughter also had ITP.  This was after she herself had become healthy and believed that ITP was in her families past.  It is really just a fluke?  I can’t believe it.

Another young girl wrote to me a few months ago, explaining the story of her diagnosis and how her mother has been dealing with ITP in her life too.  At the time of writing to me, she was struggling with coincidence of it all. Continue reading

People Living with Blood Disorders?

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This was one of the hardest articles I have tried to write as the information pertaining to the number of people living with Blood Disorders is so difficult to quantify.  There are so many different types of Blood Disorders and even more people living with a disorder without even knowing they have.

Many people are living with a moderate or mild version of a Blood Disorder meaning they do not require regular medical support and intervention – Meaning they may not be included in the statistics collected from research and surveys. Continue reading