How to Heal a Bruise Reviews

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So many thank yous to everyone who has read, enjoyed and reviewed How to Heal A Bruise.  I am so excited to be working on a second book to compliment the information and stories shared in How to Heal A Bruise.  When I doubt what I am doing, I go back to this article and am reminded about why I do what I do.

“How to Heal a bruise” is a must read for anyone diagnosed with ITP. It should be prescribed by the doctors and as early as possible to avoid feeling terribly alone, disillusioned and helpless until you have the knowledge you can’t move forward. Thank you, Meghan you are such an inspiration”

By Amazon Customer on January 23, 2016

 “Meghan’s book is the #1 guide to life with ITP. I sincerely wish I had this book when I was diagnosed, it would have assisted me and my family in understanding more about this rare disease.”  

C on October 4, 2015

“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!”

The full REVIEW from Katie Meloy can be found here.  

“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.”

The complete REVIEW Laura can be read here.

 “Good read, informative but personal.”

An Amazon review from DANNY

Have you read How to Heal a Bruise?

What did you think?  Have your say below in the comments section below.  Or better yet, head over to Amazon and share your thought there!

Patient Guide to ITP, Health Monitor

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Featured image from GUIDE2ITP

Did you know the people who created ITP PLATELET TRACKER for your smartphone also produce an ITP MAGAZINE?  Well, they do, and the latest edition is available now.  You can download the magazine for free or ask for a printed edition to be sent to your home.

It contains lots of information about treatment options, managing platelet counts and questions to ask your haematologist. There are also a few stories from ITP patients and helpful lifestyle tips.

Guide 2 ITP is produced by the company AMGEN who make the ITP treatment NPLATE (Romiplostim). This is why the magazine contains ads for Nplate as an ITP treatment.

Here is the INTERVIEW I did with Health Monitor in WINTER 2015.

 

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

Book Review; Heartaches and Miracles

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HEARTACHES AND MIRACLES is a recount of Greta Burroughs’s journey with ITP.  It begins with her initial diagnoses of ITP and takes the reader through each of her remissions, each of her treatments and each of her surgeries.  This is not your typical ITP story.

Many of you are probably already familiar with Greta Burroughs.  She is the founder of ITP…IN OUR WORDS, a blog for ITP patients.  This book is her story.  It’s honest and personal, it’s also punctuated with interviews and quotes from other ITP patients which make for a refreshing change of pace between the chapters.

There is a welcome comradery in HEARTACHES AND MIRACLES that I have not often experienced having a rare disease.  I felt like I had actually found somewhere I belonged.

The book gets off to a slow start, beginning with a dedication, a foreward, an introduction and then acknowledgments.  By this time, I was keen to get into the action and wondered if these might not have been better placed at the end of the book. Continue reading

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.

H. Pylori and Chronic ITP

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Comments about people with ITP and H. PYLORI infections are popping up all over the place.  HEREHERE & HERE.  In each case, people with ITP have seen an increase in their platelet counts after being treated for a Helicobacter Pylori infection.

What is a Helicobacter Pylori infection?

H.Pylori is a gut infection.  It is difficult to discover and treat, as H. Pylori burrow into the digestive mucosal lining and hide itself.  For the immune system to attack an infection of H. Pylori, the immune system needs to start destroying your stomach lining to get to it.  Grose hey?  This causes the immune system to be chronically active and overworked.  Perhaps the first step in a chain reaction that can cause the immune system to target the body.

What are the symptoms of H.Pylori infection?  Most people will have no symptoms at all.  A few patients may eventually present with a peptic ulcer.  An even smaller amount of patients with H. Pylori may end up with stomach Cancer.  Others may simply have indigestion, bloating or other symptoms of stomach inflammation.  Or no symptoms at all. Continue reading