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.

ITP Christmas Gifts

ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp, blood disorder

Christmas is a time to gift the gift of love.  If you are an ITP’er, or know one, here are a few ideas for Christmas.  I have been the recipient of a few of the gifts below, and I can’t tell you how much they meant.  Below are our highly recommended gifts for people with ITP this year.

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ITP Awareness Day – The Decorations

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In the lead up to this years ITP Awareness Day, September 26th (Yes , yes we know it is technically the official day for America not Australia – Don’t be a party pooper!  Australia doesn’t have a day yet ) we are getting a little excited.  ITP and Me have been doing a little bit of party planning and want to share a few helpful tips to make sure you have the best ITP Awareness day EVER!

There are lots of people out there hosting run’s and walks and all sorts of things – Me I prefer parties.

Decorations

Decorating that house is so important for any party, for it changes the space and sets a fun new tone for the party.   Continue reading

Pt One – How to Host an ITP Awareness Day

ITP Awareness Day, itp, itp bruises, bruising easily, hide a bruise, Bruises, Bruise, itp, low platelet count

In the lead up to this years ITP Awareness Day, September 26th (Yes , yes we know it is technically the official day for America not Australia – Don’t be a party pooper!  Australia doesn’t have a day yet ) we are getting a little excited.  ITP and Me have been doing a little bit of party planning and want to share a few helpful tips to make sure you have the best ITP Awareness day EVER!

Firstly, Drinks

What to serve those thirsty guests who have come all the way to your ITP Awareness day party, only to arrive dehydrated and looking for something to sip on as the mingle with your guests?  It is important to always give all your guests a prop or something they can play with while they are in the company of strangers.  It is all about making people feel relaxed and hydrated.

We suggest serving a very dark bloody juice, to get people talking.  After a few experiments in the juice department this one looks like the crowd favourite.  I have written before about the benefits of drinking juice here, Juicing – The Best Explaination and now it is time to put that into practice at your very own ITP awareness a party.

IVIG Beetroot Juice

ITP Awareness Day, itp, itp bruises, bruising easily, hide a bruise, Bruises, Bruise, itp, low platelet countITP Awareness Day juicing

  1. 3 carrots
  2. 3 strawberries
  3. a beetroot
  4. an orange or lemon
  5. ginger to taste

This IVIG Beetroot Juice will actually be very beneficial for any guests who have ITP.  Ginger is a great anti-inflammatory and contains minerals that are good for the heart such as magnesium and copper.  Oranges are packed with Vitamin C and you’ll get lots of Vitamin A and K from the Carrots and Beetroots; along with a dash of anti oxidants from the strawberries.  For my favorite juicer, I can’t go past the cold press, slow masticating juicer I have at home.  Yummy!

Sangria

itp awareness day, ITP Party

  1. bottle of red wine
  2. bottle of lemonade
  3. cup of orange juice
  4. chopped fruit to serve.

Sangria is one of the easiest cocktails you can make for a party and is perfect for lots of guests.  You can make a big batch of it in a jug and let people help themselves.  It is also easy to quickly made a bit more in case you run out, just have the garnish fruit chopping in the fridge and ready to go.

 

More to come…

Over the next three weeks, we will be posting more handy tips about decorating your house for the party, which fun foods to serve and how to provide some quality entertainment for your ITP Awareness Day.  We may even throw in a few ways that you could raise awareness and perhaps even some money for ITP Awareness.  Stay tuned for Part Two.

ITP in the News & Media

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ITP is not often in the Media – But when it is, we know about it.

Check out all the latest Newspaper and online articles about ITP here.

Also, we have made a nice list of famous people who have ITP too.

People with ITP, ITP stories, Living with ITP, ITP in the NewsHow a TREATMENT GAMBLE Paid Off, 17 Feb 2015

The story of one patient’s decision to use the chemotherapy Rixtuxin, even though it is not currently approved as an ITP treatment.  After a seven month battle with prednisone symptoms, side effect and withdrawal symptoms, the drug stopped working for Candace.  ‘After my platelet levels plummeted down to 14, my doctors and I had to change the course of treatment.’

Rixtuxin stories, itp stories, tip blogs, blogs about itp, blogs about platelet disorders

 

ITP patients, blood disorder, low platelet counts, ITP and People blogs about ITP, ITP blogs.Rare Autoimmune Condition gives TEEN A NEW OUTLOOK ON LIFE, 15 Feb 2015

Initially diagnosed with a platelet count of 4, Lynn was given what all suspected ITP patients are given as a first line treatment, steroids.  A story about how life changes for ITP patients who are still going to school, and how it does not all end up bad.  Read more about this ITP patients life at school…

Rixtuxin stories, itp stories, tip blogs, blogs about itp, blogs about platelet disorders

 

2014

ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp.   Famous people with itp, celebrities with itp, low platelet count,
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Real Lives: I could bleed to death from just having a tooth out, July 2 2014

Angela, an occupational therapist for the forensic mental health service in Liverpool, is supporting a new campaign. Launched by The Haemophilia Society, the charity is encouraging everyone to get “Talking Red”, to make women more aware of the symptoms of a bleeding disorder.  Angela has a platelet Pool disorder, which is not technically not ITP but still in our circle of friends.  
 
people with itp, Treatment for itp, treatment of itp, treatment itp, itp treatments, Side Effects Prednisone, Azaria Allen
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Help for Rare Disorder in US, July 3 2014

When Azaria was 2 she had many bruises on her legs, arms, spine and a black bruise on her cheek, Wendy says.  "She didn't remember getting any of them. Azaria was also tired and falling over a lot."  She had X-rays, CT scans, a bone marrow biopsy, and up to four blood tests a week, as well as emergency hospital visits.  "Azaria was diagnosed with ITP, which is not genetic and non-contagious," Wendy says.  "It is likely a virus caused her disorder."
We have featured an article on ITP and Me on Azaria's Story which you can find here.
ITp,
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Cross Keys boy has to stop sport as the slightest knock could kill him, June 19, 2014

JACK MCINTYRE used to love judo. But the boy of eight from Cross Keys can't take part in his favourite pastime any longer - a condition developed two years ago means a knock to his head or abdomen could prove fatal.
His father, Mr McIntyre is now raising money for the ITP Support Association and will be running the Cardiff Half Marathon in October.  Follow the link to donate here. 
 
ITP, blood disorder, Meredith prescott
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What's Your Number? One Number Could Cost You Your life, May 12 2014

Meredith Prescott, Master's candidate of Fordham University, has written an insightful article for the Huffington Post, outlining what it is like to live with ITP and how we can raise awareness and support. After a very successful event, raising over $45,000, I decided to plan my second 5k walk/run this June with another fighter, Linda McGuirl, to find a cure and help rid this world of ITP. Linda and I were both diagnosed at 21, and although we are decades apart in age, we both take strong pride in raising awareness and taking control of ITP. Riding the roller coaster in the world of ITP is so much better when you're not riding alone...Read More. 
 
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Will Chambers has been cleared of a potentially fatal blood disorder, June 15 2014

The Storm flyer has received the green light from doctors, two years after Melbourne were warned he could bleed to death if he was exposed to heavy contact at training.
The 26-year-old will become Queensland's 179th Origin player if Billy Slater or Greg Inglis withdraw from Game Two on Wednesday night. Peter Badel for the Daily Telegraph Sydney.  

     

Traveling with ITP, ITP and me
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Helena Woman does not let Auto Immune disorder keep her from traveling the world on her own, Oct 30 2013

In an article written by Peggy O'Neil for the Independent Record, Jamie Harwell speaks out about travelling the world with a platelet count of 30.
This year she will participate in the 31st annual El Tour de Tucson on November 23 where she will pedal 111 miles helping to raise money for ITP, idiopathic thrombocytopenia purpura, which she also has. 
   
famous people with itp
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Phegley thrives after battling blood disease, Aug 26 2012

Charlotte Knights catcher Josh Phegley overcame a serious illness, itp in 2010. Today, Phegley is helping the Knights prepare for the International League playoffs, which begin next week...One day early in the season, a ball was fouled off his thigh, leaving a dark purple bruise.  “Catchers get those kinds of nicks all the time,” Phegley said. “But I wondered about it because I don’t bruise easily.”  The next day, the bruise had spread around to the back of his leg, growing to about 9 inches in diameter.
 
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Rare blood disorder sidelines Chambers, Jun 7 2012

DESPITE feeling fantastic, Melbourne centre Will Chambers could have died from a rare blood-clotting disorder that has stalled his NRL career indefinitely.
Chambers will be sidelined until he recovers from the auto-immune disorder ITP (idiopathic thrombocytopenic purpura).  The only symptoms were some red dot rashes that appeared in the 24 hours after the Storm's win against the Warriors on Sunday.
   
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Australian Open 2013; Jamie Baker makes recovery, Jan 13 2013

After coming through qualifying, Baker wants to create his own fairytale here in Melbourne, and goodness knows he deserves a change of luck. So many of the difficulties he has experienced are connected to the horrific illness he contracted in March 2008, just as it seemed he was about to crack the top 200 for the first time.  Coming back from a tournament in Mexico, Baker found that bruises were appearing all over his body for no apparent reason. Then, when he visited a hospital in Florida, he was diagnosed with ITP.
   

famous people with itp, ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp,
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Actress Lisa Blount dead at 53 from blood disorder ITP, Oct 10 2010

Actress Lisa Blount dead at 53 from blood disorder ITP
 isa Blount, who co-starred in the 1982 drama An Officer and a Gentleman, died Oct. 25, 2010 at the age of 53 after battling the blood disorder Idiopathic Thrombocytopenic Purpura (ITP).
Not too sure what is happening in this article as the reporter likens ITP to the neurological illness like MS?  'Sources say the actress had complained of chronic back and neck pains, and her mother told police Blount had battled ITP, a neurological illness similar to multiple sclerosis for 17 years.'

Livingston’s Meredith Prescott to Hold 5K Fundraising Run

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fundraising advert

After a very successful event, raising over $45,000, I decided to plan my second 5k walk/run this June with another fighter, Linda McGuirl, to find a cure and help rid this world of ITP. Linda and I were both diagnosed at 21, and although we are decades apart in age, we both take strong pride in raising awareness and taking control of ITP. Riding the roller coaster in the world of ITP is so much better when you’re not riding alone.

Don’t let your compassion stop at wishing to see others free from suffering. Do something.

To pre-register, or make a donation or for more information, visit this link.

Registration/Check-in will begin at 12:00pm and the event will begin at 12:30pm at the Livingston Oval in Livingston, NJ on Sunday, June 8th.

If you can’t make it to the run but you would still like to be a part of raising itp Awareness, you can join the dicussion on Instagram.  Lots of itp patients are spreading the itp awareness love at Hashtag #itpawareness!  Share your photos today.