Win a Signed Copy of How to Heal a Bruise!

A wonderful platelet pal, the owner of ITPandMe.com has published a book! I am so excited to be giving away three signed copies of the book.

Rules:

Contest begins on Wednesday, September 23, 2015 at 11am EST.

Three (3) people will be selected to win a signed copy of How To Heal A Bruise by sharing a social media campaign message to raise awareness of ITP.

#ITPAware day, Sept 25! Check out How To Heal A Bruise: http://itpandme.com/itp-awareness-day-coming-soon/ #raredisease @RareCandace @meghan_brewster

**Make sure you put Meg & I in the tweets so I can see them!**

Also, I will accept bonus submissions if you tweet using #ITPAware and link to How To Heal A Bruise on Amazon!

BUT WAIT!

Take a photo holding a sign discussing life with ITP, the 21st Century Cures Initiative or how much you hate Prednisone and you will receive TWO (2) bonus entries!

Note: you’re giving me consent to use your photo on social media to continue to raise awareness about ITP. Get creative and have fun! Make sure you tag me on Instagram and Twitter: @RareCandace 

Winners will be announced Thursday, October 1st at 5pm EST (if I am late, forgive me as law school and my new autoimmune issues have been kicking my butt lately).

Dear Senate: You Should Care About the OPEN Act

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Allow me to introduce myself. My name is Candace Lerman and I’m a 28 year old rare disease patient. I lived 27 1/2 years as a happy and healthy person with a successful career, hobbies, lots of friends, the American dream. Then on May 1st, 2014 everything was taken from me. I was diagnosed with a rare blood disorder called Immune Thrombocytopenia (ITP). I had my whole life turned upside down because of it.

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My disease can be painful and debilitating. I lived in a bubble while the best doctors in the world at the University of Miami tried to bring my disease under control. After seeing that steroids wouldn’t work and were destroying my body, my doctor recommended something that seemed impossible. He told me about Rituxan, a drug that treats Non-Hodgkins Lymphoma patients, and he thought it could help me control ITP. I was shocked, I was beyond scared and I was worried about what “chemo” would do to my already frail body.

I had to pray a lot, research a lot, think A LOT. I took a leap of faith and decided to go through with the treatment. I started this blog and documented everything, I wanted people to see what my experience was like using an FDA approved drug, off label. When I was declared in remission, I was elated. Finally I could begin to rebuild my new normal as a rare disease patient. I no longer had to live within the confines of ITP. I no longer had to fear dying too soon. The treatments were easy to deal with, and after four weeks I was an entirely new person. I finally established my new identity as a Rare Disease Warrior.

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I traveled to DC for Rare Disease Week at the end of February and had the chance to meet with one of the sponsors of the OPEN Act, Congressman Bilirakis. I was moved to tears after telling him my story and our discussion of how repurposing FDA approved drugs for rare disease patients could save lives. I finally felt that all of the pain, the suffering, fear, heartache and sacrifices I made were going to contribute to a great cause. I don’t want anyone else with ITP or any other rare disease to experience the hopelessness I felt.

Shortly after my 28th birthday, before I ever knew I had another option, I contemplated killing myself. I’m not saying this to be dramatic, but I felt that there was no way out of the hell I was stuck in. I felt like I wouldn’t be able to live a normal life with the treatment options I had available. I wanted to go to law school, hang out with friends, spend time with my boyfriend, travel and experience all the wonderful things being 28 has to offer. I didn’t think I would have a chance to do any of it. I thought I would spend the rest of my life in and out of the hospital and my doctor’s office.

Rituxan has allowed me to be myself and I don’t see why other patients like me shouldn’t have the same opportunity I had. I am starting to worry about continued access to Rituxan once my remission ends. I have to change insurance plans at the end of the year, so since Rituxan is considered “off label”, I might not be able to use it again when my ITP comes back. This is why the OPEN Act is so important to me. I want to be able to continue living a normal life.

So Senators, I ask that you support the OPEN Act and work together with representatives in the House to get the 21st Century Cures Initiative on President Obama’s desk by the end of the year. I know it can be done, and patients like me cannot wait any longer. We need more treatments and cures, before it’s too late!

Op-ed on the OPEN ACT featuring ITP

I’m honored to have my story mentioned in Congressman Bilirakis’ op-ed piece which is on The Hill today. The 21st Century Cures bill passed the subcommittee by a verbal vote which is incredible!

The link to the article is here. Be sure to continue reaching out to your representatives and encouraging them to support the 21st Century Cures legislation!

The Fear of Remission Ending

When I was finally done with my Rituxan treatments and my doctor declared it a success, I was so relieved. Finally I felt like I had some control over ITP. Then I inquired about how long my remission would last. I was warned that after about 9 months, my body will start to produce new working cells that Rituxan had disabled. I referenced my calendar and saw that it would be close to my 29th birthday. Now every day I wake up, I think about this upcoming date.

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How Washington Can Change Rare Disease: Part Four

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President Obama announced the Precision Medicine Initiative to a room full of doctors and representatives from the healthcare industry. While this is an exciting time for patients dealing with various forms of cancer and other conditions, noticeably absent from the plan was the rare disease community. In fact, I have yet to really encounter anything from the PMI that focuses on researching rare diseases despite all the rhetoric with understanding genetics and how medicine can taylor treatments to suit an individual.

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From Fearing To Facing My Rare Disease

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If you told me in May 2014 that I would complete a 5k nine months later, I would be shocked. In fact, I would probably think you were crazy. I thought that because I was diagnosed with immune thrombocytopenia, my life was over. There was no hope, only an endless battle with needles and platelet counts. Today I proved myself wrong, and it felt so good! Continue reading

What “Being Rare” Has Taught Me

Two weeks before diagnosis.

Two weeks before diagnosis.

They say ignorance is bliss, and I would have to agree. In the weeks leading up to my hospitalization and being diagnosed with a rare disease, the last thing I thought about was anything health related. I was more focused on work and the daily stresses of life. Then when my world came crashing down, my focus was forced to shift. All of the sudden, I had to live day by day. I was no longer working for the weekend (be honest, you started singing that song in your head), the things that take up my time had to be carefully considered. These last 7 1/2 months have given me some interesting lessons. Continue reading