How to Chat With Your Doctor

It seems we spend more time in the waiting room than actually interacting with our doctors. That’s why as patients we must consolidate as much information as possible and leave out unnecessary details. Given the prevalence of health data trackers like Fitbit and Jawbone, it is critical that we focus on important symptoms and side effects. Continue reading

Rare Disease Advocacy Gone Astray

I’ve been rare for about 14 months now, enough time to start noticing things within the space that aren’t so fabulous. I’m pretty disgusted by the actions of a few people and organizations that are treating rare disease advocacy as some sort of popularity contest.

News flash: If you’re popular with fellow rare disease advocates, you’re doing it wrong!

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Achieving an Accurate Diagnosis for Immune Thrombocytopenia

With the prevalence of inaccurate diagnoses issued to rare disease patients, I feel obligated to give an explanation of how my doctors determined I have Immune Thrombocytopenia. While this guide should not be used in place of a healthcare professional’s official diagnosis, you may use this as a guide to request tests so that you can be certain that you have ITP. There are a lot of other diseases and disorders, many of which are autoimmune in nature, that have thrombocytopenia as a symptom. Thrombocytopenia and Immune Thrombocytopenia (ITP) are two entirely different conditions.

*Please note when I discuss my platelet levels, I am referring to them in the 1000 range. So 65 = 65,000*

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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!

ITP and GMOs

There is a lot of controversy surrounding Genetically Modified Organisms (GMOs) and their impact on our health. In the months leading up to being diagnosed with ITP, I was eating an entirely organic diet. Since my disease was triggered by toxic chemical exposure, the food I was eating did little to keep ITP away. Now that I have a chronic illness, my choices in food have changed dramatically. Don’t let the hype from either side of the aisle sway you too much, just look at the basic facts. You never know if this could be making your disease worse!

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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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Why Patient Data Should Be Shared

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I attempt to keep my paper data organized with folders.

 

Sharing patient data is a hot topic right now. With HIPAA being misunderstood by many people and the fear of privacy being violated, most people cringe at the thought of releasing their health information to others. What if I told you that by donating your data and remaining anonymous, you could potentially save the lives of other people? In the rare disease community, this is how many people think. If you don’t think this way, I’m here to tell you why you should.  Continue reading