It’s My Party and I’ll Cry if I Want To: Part II
So right as I decided no more pity party, got myself together, I got a big packet from the Mayo Clinic as I was walking out the door.
I had some genetic testing done back in January during my first visit to MC, but because I had such issues with the doctors and they would not return any of my calls or messages, I never received my results. I also hoped that because no one would return my messages or calls that the tests came back normal (many doctors do not call if results are normal). Wrong.
After writing a letter to the CEO of Mayo Clinic a few weeks back about how awful my experience there was and how unprofessional and downright negligent the doctors I saw were, Dr. W (the rheumatologist I saw at Mayo) finally decided to send me my results and a letter of apology. The letter of apology I don’t care about; it’s done, over-with, and he’s not my doctor nor will he ever be. But here is where his irresponsibility and lack of professionalism comes to light:
The genetic testing came back abnormal.
I tested positive for a genetic mutation usually associated with a condition that has no cure and no effective treatment to date, however my mutation is so rare that there is no research correlating it directly to the disease that mutations of that gene are tied to. Uh, okay?
A 21 year old student and ePatient advocate working to help others navigate through life with chronic pain, chronic disease, and disability. Sharing resources, advice, helping others find a voice and become empowered patient advocates. Raising awareness for Autoimmune Arthritis and Autoinflamatory diseases.
