Book Reviews, How To Heal A Bruise

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I’m so happy and proud to be celebrating HOW TO HEAL A BRUISE‘s 1st Birthday. It is one year of the book being out there in the world, and to celebrate I’ve been looking through reviews.

The book is AMAZING! It’s so easy to relate too. I read the titles of the chapters and was positive I hadn’t been through that phase, then after reading it in more detail, the realisation sank in that I had, I just hadn’t realised it.

It is honestly brilliant. Thank you for writing it! I think it will be a massive help to all ITP suffers and their family and friends.

Meghan’s book is filled with all kinds of important information on Immune Thrombocytopenia, even a detailed history of how it was discovered. I highly recommend this book for anyone who has ITP or knows someone with this blood disorder. It will change the way you look at the disease and empower you to take a more proactive approach with your health.

“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

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How to Heal a Bruise is On Sale!

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Feature image from ITP&ME

Bruise, bruising, itp, itp bruises, bruising easily, hide a bruise, bruises, bruises cover up, makeup bruises, low platelet count bruise, , ITP books, ITP book, meghan brewster itp, meghan itp, ITP stories, low platelet books, ITP, how to heal a bruise,To celebrate ITP Awareness Month, HOW TO HEAL A BRUISE on Sale!

ITP AWARENESS MONTH is a chance for people living with ITP, patients and families to come together, learn more about ITP, reflect on their own health and raise month to support ITP services.

KINDLE EDITION for only $5

HARD COPY EDITION for only $15

You can learn more about How to Heal a Bruise by following this LINK.

ITP Awareness Day Coming Soon…

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September is ITP Awareness Month.  And the last Friday of the month is Sport Purple for Platelets Day.  This year it’s on the 25th of September.  Yay!

To celebrate ITP AWARENESS DAY, ITP & Me will be launching HOW TO HEAL A BRUISE, an ebook about living with ITP.  Read all about it HERE

Here it is…

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HOW TO HEAL A BRUISE is currently available for preorder through AMAZON.

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Your Guide to ITP on Twitter

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Feature image from TWITTER

It is no surprise that ITP has made it onto Twitter.  There are a number of different people and organisations tweeting and sharing articles on ITP via #itpawareness #itp #itpproblems and #raredisease.  Here are a few people to follow, below

PDSA ITP SUPPORT


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@PDSA_ITP
Platelet Disorder Support Association – the premier source for information, treatments, and support for people with ITP, Immune Thrombocytopenia.

 

ITP SUPPORT ASSOC

twitter 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 disorder@ITPSupportAssoc

UK Charity supporting sufferers of the autoimmune bleeding disorder Immune Thrombocytopenia.

RARECANDACE

twitter 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 disorder@RareCandace

Disrupting the  space with Immune Thrombocytopenia (ITP).  FL Director @RareDiseaseUntd


 

ITP PROBS

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@ITP_Probs
ITP is a rare autoimmune blood disorder resulting in low platelets, I hope this page gets the word out and connects everyone through the struggle of ITP.

 

LYNETTE SHELTON

itp on twitter@killeygirl

Mum of Twins, adventurous, philanthropist, woman of many talents, ITP Patient (lack of Platelets) 12 years and still fighting to survive.

 

 

 

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.

Elementary School goes Purple on Sept 26th

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Article from North Myrtle Beach Times 

School goes Purple for the Day

On Friday, Sept. 26, Ocean Drive Elementary School students wore purple in an effort to raise awareness for ITP. They wore purple tops, bottoms, shoes, accessories, jewelry and hair bows. The more purple they sport the more awareness they raise for ITP…There is no known cause or cure for ITP. It’s a growing but little understood health problem. The disease has not generated the kind of publicity, educational efforts or support that other chronic or autoimmune diseases have. The PDSA (Platelet Disorder Support Association) has been working for over 10 years to support families and patients affected by this disorder. In recent years, they have made substantial progress through education, advocacy and research.

ITP Awareness day, sport purple for platelets, ITP raising awareness, itp fundraisingFor many ITP patients this disease is a roller coaster of emotions. ITP has a huge impact on the day to day physical and psychological aspect of their life.
There are only treatments for ITP, which are only temporary fixes to raise or maintain platelets. There is never a guarantee that they will work or the amount of time a treatment will last.

It appears that the school involved, Ocean Drive Elementary has a student that has been affected by ITP. Raising awareness is a positive way for him and his family to cope and raise hope for a cure.

Published on October 2 2014.  Author unknown.