Your Guide to ITP on Twitter

itp twitter, itp on twitter, 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,

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


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

@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

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
@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.

 

 

 

Paulien Barkmeyer

itp alternative therapy, itp oil pulling, itp bleeding gums, itp bleeding mouth, itp life style, itp help, meg brewster, itp meghan brewster

Feature image from AVJENNINGS

Welcome to Paulien's Story

Hi! My name is Paulien Barkmeyer and I am LIVING with ITP! The operative word being LIVING!

Much like you, I have been on a tremendous journey of highs, lows, ups, downs and insides outs finding a way to come to terms with this condition and after approx. 7 years I have finally come to the point of “living with” rather than “a battle against” ITP.  My numbers continue to be pretty crappy, my energy levels wane and all the other bits and pieces that go along with our condition.  I’ve finally given up my dream of being a Roller Derby Queen!

My health and health habits are probably the best they have ever been.  My life is filled with joy and joyful activities.

As you are well aware, your life can become consumed with treatment regimes, blood numbers and endless prodding and pricking from various health professionals.  Searching for a “cure” can get you down and depressed However, only in the last years or so have I reframed my view of this situation.  

I figure there are plenty of things I have no influence or control over so I made a decision to focus my energy and attention to the things I can influence.  I’m certainly not putting on my “rose coloured glasses”, just looking at my life and condition differently!  Currently, there is no changing the fact that I LIVE with ITP and try as I might, it may never go away.

I liken my shift in perspective a little like getting caught in a rip and “going with it” rather than to expend all my energy fighting against it.  I’m just “riding the wave” baby!

Some of the more practical habits I have put into place include: Continue reading

Are you Trying to Roast Your Own Beans?

itp awareness, itp support, itp support groups, itp awareness day, sport purple for platelets, itp raising awareness, itp fundraising.

Feature image from LISSYELLE

There is a café down the road from my house that has always had a juicer.  Today I’m writing from inside that very café.  Recently they have got themselves a coffee bean roaster.  It smells amazing.

It smelt just like my oven in Mexico when, for a brief moment, I experimented with DIY coffee bean roasting.  It was a wonderful smell before all the coffee beans inside the oven caught on fire and filled my host family’s house with smoke.

I know nothing about roasting coffee but I thought, ‘Hey, how hard can it be?’  So I googled a youtube video and away I went.  I’m not a professional coffee maker, I had no clue what I was doing.  It was disgusting, but I did it anyway, because I could.

The Destructive D.I.Y.

It’s tempting to try and do everything yourself, to do things you have no idea how to do.  DIY is everywhere at the moment, people encouraging you to do it all yourselves, to build your own tables, mud brick your own homes, bake your own bread, grown your own veggies, brew your own beer, make your own clothes, keep your own honey bees and ferment your own kombucha. Continue reading

ITP on Capitol Hill, by Rare Candace

rare disease, cure rare diseases, rare disease week, 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,

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

ITP h.pylori, itp and h. pylori, itp alternative therapy, itp oil pulling, itp bleeding gums, itp bleeding mouth, itp life style, itp help, meg brewster, itp meghan brewster

Feature image from ITPANDME

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

Tammy Farrow

Tammy Farrow, Bruise, bruising, itp, itp bruises, bruising easily, hide a bruise, bruises, bruises cover up, makeup bruises, low platelet count bruise,

Feature image from TAMMYFARROW

Welcome to Tammy's Story

My name is Tammy Farrow.  I am 32 and live in a small village near Bath, England. I married John, my partner of 10 years in July 2012 and we have 3 children, Johnnie, Marylou and Blossom. I am a stay at home mum, spending my days looking after the children and keeping the house organised (sort of).

I am a self-taught hand lettering artist and illustrator, and have just opened an ONLINE STORE to sell my creations – this is something I really enjoy and spend as much time doing as I can – I have found it especially therapeutic since I have been ill. Continue reading