Tis The Season for Action!

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Kona wanted to make a special holiday appearance in honor of our call to action for the Senate over the 21st Century Cures initiative. I sincerely hope that when I arrive in DC in a few weeks, progress will have been made. There is no time to waste when 30 million Americans depend on Congress to take action.

My blog is a road map of my rare disease journey, starting last year when I decided to take a chance and use Rituxan off label. It is not approved for ITP patients. Why? Because we don’t have enough information and research on ITP to conduct a comprehensive clinical trial. One of my goals for 2016 is to change that. Through my research, I have been able to isolate a population of ITP patients who can and will benefit from use of the drug. Simply put, this drug is a life saver and the people who achieve remission from it enjoy a few years of a fairly normal life. There is absolutely no reason why this should be denied to people like myself.

Tomorrow is December 18th, which happens to be the one year anniversary of my remission. I truly believe this gift was bestowed upon me to give me a chance to fight for others. I have lost a few friends in the past year to ITP, it doesn’t get any easier and it makes me realize just how fortunate I am.

I’ve spent the last 365 building my new normal, now it is time to change medicine.

Stay Out of My Bubble

With two weeks of law school completed, I am physically drained. It isn’t due to the work, I have worked longer and harder hours doing physical and mental labor that was nothing short of torture at times. The difference now is my health. I cannot sustain myself for extended periods of time because my body has to try and fight off germs from the hundreds of people I encounter at close proximity every day. I almost exploded this week because people can’t respect personal space and therefore were making me worry that I might become sick. Up with a scratchy throat at 8am on a Saturday, I’m afraid that my concerns were justified. Continue reading

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!

Rare Disease Week in DC

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Discussing the OPEN ACT with Congressman Bilirakis

I am so excited to share with everyone my trip to DC for Rare Disease Week. It was a wonderful opportunity to meet with other rare advocates as well as healthcare industry leaders and political figures to discuss important legislation. Personally, it was a life changing experience where I finally felt that everything I have gone through in the last 313 days can have a positive outcome. While my situation is unique and I have a rare disease, my decisions can be used to trigger the changes necessary to allow all rare patients a chance at a better life.

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Rituxan Finale!

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I am happy to report that I completed my final round of Rituxan yesterday. My platelets were at an impressive 193,000, a nice number considering I am continuing to drop off the prednisone. I should be off that completely by next Thursday. Then I will wait for my adrenal glands to start working again, after a nice 7 1/2 month vacation. In addition to that, there are further challenges ahead.  Continue reading

Rituxan Round 3: Failure Is Not An Option

IMG_3797Forgive me for not writing about this sooner. I had to schedule my third Rituxan treatment on Wednesday due to the Thanksgiving holiday and it kicked my butt! I was flatlined on Thursday, very little eating and enjoying turkey day with everyone. I tried to make up for it by eating leftovers all day on Friday. And yes, your eyes aren’t deceiving you, I had 234,000 platelets Wednesday morning! Continue reading

Redefining Thankful With A Rare Disease

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Major highlight of this year was seeing Sugar Ray at Epcot with one of my best friends.

With Thanksgiving around the corner, everyone is asked to reflect on what they are thankful for. I was always annoyed by this, because you could push this in all kinds of directions. You could be thankful for being alive down to your football team winning. What makes what one person is thankful for better than others? How about focusing on unique things that mean something to you specifically? After all, each one of us places different values on daily events.

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Round Two of Rituxan

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Two down, two to go! I can’t wait to be finished!

I managed to get through my second treatment of Rituxan yesterday rather quickly. I was still fairly nervous, this time the drip was quicker and there was no waiting period between the premeds and treatment. Thankfully I didn’t have any reactions, I wasn’t even tired from the Benadryl. I had my same wonderful nurse, Heather and yes they asked me if I had Ebola. I totally cracked up laughing when I was being processed. Even the guy at the desk couldn’t help but laugh. Not that Ebola is funny, but just the fact that you’re being asked if you traveled to West Africa in the last seven days since doing chemo. Yeah, I wish I had the energy!  Continue reading

Why Rituxan for ITP?

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Friday I went through my first round of Rituxan to attempt to treat Immune Thrombocytopenia Purpura. My decision came after 6 months of using high doses of Prednisone and failing to keep my counts above a safe level. The decision was not easy, the discussion with my doctors leading up to the final “ah-hah” moment was lengthy. Rituxan is not FDA approved for treating ITP (it is used for Non-Hodgkin’s Lymphoma), but it was approved for Rheumatoid Arthritis in 2006. My doctors suggested I consider it, I was scared at the idea but I ventured out to find out as much as I could.

I connected with multiple ITP patients online to discuss their experiences with the drug, as well as conducting my own research before talking to my doctors. This was out of the ordinary for me as I’m still new to the Rare Disease community. But I felt very empowered being able to hold a detailed scientific discussion about the pros and cons of “experimental medicine”. I read everything I could about reactions, response time and the biology behind the drug itself. Yes, the day after treatment I had cheese. I swear, I was craving it! Must have been the mice protein getting to me.

However, to the outside world, my decision was reckless. People were quick to declare me crazy, tell me I was poisoning myself, handing me cards to “healers” and nutritionists. Even going as far as telling me I am selling out to Big Pharma. Here’s a little hint: “Big Pharma” saved my life.There aren’t a lot of adults with chronic ITP in the world. Especially not like me. I’m not here to debate the existence of cures for disease, as I know there is no cure for ITP as the human immune system is a very large mystery. I am grateful that Big Pharma exists, and that they have the money and brain power to create options for me like Rituxan. If I am lucky, I will be one of those fortunate people who enjoys a period of remission from my disease.

This hurt a lot less than anticipated

This hurt a lot less than anticipated

If Rituxan works, I am taking my story to the manufacturers of the drug to request that they pursue more studies for ITP patients. I am also going after Congress to push for improvements and edits to the Affordable Care Act, something that needs to happen for all rare and chronic disease patients. Our treatments and daily medications are expensive. There is no reason someone should consider whether or not to do a treatment based on cost. We should be making decisions based upon scientific knowledge, communication with other patients and self-driven research.

As my treatments continue over the next month, I expect to continue to be judged by the outside world. I will hear the whispers of how dangerous this is, how “stupid” I am to be killing myself with harmful chemicals and so on. The truth is, unless you step into the ring and face an opponent that cannot be beat, you cannot judge! This is my fight, I’m choosing to share it in hopes that maybe someone else stumbles along and will feel less alone.

Here I am as the Benadryl kicked in. My poor face was finally getting rid of the acne, and then I had to go back to 60mg of Prednisone.

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If you are an ITP patient, caregiver or work in medicine, my advice to you from my war is to help keep open minds for everyone involved. My family, boyfriend and close friends were intimidated by the idea of “chemotherapy”. I even felt a little panicked after a while! So I sat down and started exploring, then I went back to everyone and said “I’m doing Rituxan!” It was a shock at first, but when I explained my research, what I had heard from other patients and what options I had, I felt that this was my best line of treatment.

For hematologists- it is important that you encourage your patients and their caregivers to look at the medical background surrounding Rituxan. It wasn’t so scary once I understood it is a monoclonal antibody against the protein CD20, not traditional chemotherapy. On the other hand it was also important that I was aware that reactions during infusion are serious and must be dealt with swiftly.

Bring on round 2!