The story of Sam
Being diagnosed was just the beginning of the most painful event and roller coaster in my life. As a child I suffered from chronic fevers and abdominal problems always with pain. Suddenly after becoming extremely ill with weight loss from vomiting and other stomach issues due to the Familial Mediterranean Fever, luckily a doctor whom had a patient with similar symptoms decided to take the genetic test and send it off to a lab. Despite the results I was put through so many other painful tests and medications. After visiting several of the top named hospitals in the US I verified the diagnosis however no treatment was available as I did not respond to the traditional treatment method and had bad side effects of the medication. This doesn’t even account for the nightmare of suffering with the pain and no one wanting to provide treatment for it. Until this very day that continue to remain an issue.
However to my luck before going abroad for treatment I discovered a doctor in NYC at Columbia Presb Hospital who was able to help me. She looked out of the box and found new medications that cost a fortune however helped.
Now that I have received these treatments I have been free of episodes for the past six months. I do still get flare ups however nothing on the scale of what they were. I was so hopeless and there was absolutely no one willing to help. I continue to struggle with pain however I have begun to learn to live with it the best I can. It is surprising though living in such a big city like NYC and getting pain management continue to be a nightmare.
I am so grateful and lucky for the family and social supports I had that stood by me during all my hospitalizations. It is such a rare disease most doctors look it up when I mention it. On top of it I have Addisons Disease as well.
I just wish that everyone can be as lucky and find some treatment and relief. I was giving up hope and felt like I could no longer go on. My attacks became so bad I always ended up calling an ambulance to carry me out of the house covered in my own body fluids and so weak and sick it was so embarrassing and agonizing. I just am very fortunate that I slowly am recovering. Life is really improving and I really can’t complain at this time. I only hope others can hold on as long as I did to manage to survive.
Meet others who understand on the international FMF community on RareConnect.org:
https://www.rareconnect.org/en/community/familial-mediterranean-fever