Wednesday, April 29, 2015

T-4 Days!!

It's's almost here...only 4 days until the Providence Marathon!!

As I've mentioned before, I'm the patient partner to Fran Crofts as a part of the Running for Rare Diseases 2015 Team. A group of R4RD runners and patient partners attended the Boston Marathon just about 2 weeks ago. They had a fantastic showing in Boston, and are looking forward to the Providence Marathon where another group of R4RD runners will race in the marathon or half marathon.

Fran will be running the full marathon on Sunday, and has spent the past few months training for this weekend. This was a particularly difficult winter for running, so help me encourage her and wish her good luck for the race!

Not only has Fran spent the past few months braving the rough northeast winter and tallying up the miles, but she has also committed to raising funding for the Undiagnosed Diseases Program at NIH. The entire R4RD team is not only running races, but also raising awareness and funding for patients struggling with rare conditions that doctors have not yet been able to diagnose.

It was not that long ago that I was in that place, knowing there was something wrong, but yet not having a diagnosis. While I'm the poster child to say that having a diagnosis does not necessarily mean a cure or immediate improvement, it still can be a HUGE step in a positive direction for patients dealing with rare diseases.

Before being diagnosed, I dealt with doctors telling me there was nothing wrong, prescribing medications to treat conditions I didn't have, and the uncertainty of knowing my body was failing me and being unable to do anything about it. Pain, nausea, dizziness, passing out, shakiness, vomiting, hives, rashes, headaches, brain fog, shortness of breath, and more were all a part of my daily life and there was nothing I could do but play Russian Roulette every morning to try to manage my symptoms and function "normally."

Obviously I'm not "healthy" yet, but we are definitely moving in the right direction. My symptoms are usually able to be managed much better now that we know what is causing my issues. Just having the diagnosis of MCAS means we know what we are treating and while every treatment may not be perfect, we are moving in a positive direction. I can confidently say that today I am significantly improved compared to where I was in January when we were still grasping at straws.

Being a part of the R4RD team has given me the opportunity to raise awareness for a cause that is incredibly personal for me and my family. Please help me, Fran, and the entire R4RD team spread the word about how desperate a need there is for funding for the Undiagnosed Diseases Program for those patients that are still searching for answers by sharing this post with your friends and family!

Also, please considering donating to Fran's fundraising page ( and helping her raise funds for the UDP and other patients like me!

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