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).

This isn’t About Passion

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In the last few months as I slowly get to know professors and administrators in my school, I have noticed a trend. I wouldn’t say it is an academic thing, or law school related, rather it is just ignorance. When I express my motivation (or insanity) behind deciding to go to law school such a short time after being diagnosed with my rare disease, I’m met with a strange reaction. Everyone says the same thing except in different ways. It boils down to, be passionate but focus on your studiesContinue reading

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

Five Things I Learned Living With ITP

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September is ITP awareness month, so it is only fitting to start off with a list of the things that I have come to discover about life with low platelets. It has been a challenging, difficult and frustrating journey. However, I would be lying if I said I wasn’t a better person because of it. Continue reading

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.

Continue reading

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

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!