Chronic Illness Spotlight is a new series in which different illnesses are highlighted and a patient that lives with the illness is featured. Today’s post will spotlight a rare Chronic Illness called Familial Mediterranean Fever (FMF).
Familial Mediterranean Fever
Meet Ashley Marie, she is recently engaged so congratulations are definitely in order! Ashley Marie has two Chronic Illnesses, one is called Familial Mediterranean Fever (FMF) and the other is Behcet’s Disease.
Today, we will be focusing on FMF. If you would like to learn more about Behcet’s Disease, visit the American Behcet’s Disease Association. Here is the interview with Ashley Marie.
Briefly explain your illness
FMF is a rare autoinflammatory disorder that causes widespread internal inflammation, fever, joint stiffness and pain. Flares occur randomly and can be triggered or just appear. Flares usually last about 3 days and are noted by high fever, intense pain with concentration on the abdomen, joints and head, brain fog and fatigue.
How has your illness impacted your life?
I am always in some sort of constant pain and inflammation. I don’t get to have much of a social life. Work is difficult and I am often very tired and in pain.
How long did it take to get diagnosed?
Why do you think it took that long to get a diagnosis?
FMF disease is fairly rare and there is not a lot of funding, therefore not a lot of research. Many doctors do not even know what it is.
How is your life different now compared to a few years ago?
I have had to learn to hold myself back more for the sake of my health. I cannot do certain fun activities or I have to limit my daily functions. I also have a hard time eating with so much stomach inflammation so eat bite of food must be carefully planned.
What do you do on you bad days to make them better?
I allow myself to rest. A hot bath, heating pad and Netflix are usually some comforts.
How do you handle the isolation you may experience because of your chronic illness?
There are not many people who are even aware of FMF so it’s fairly lonely. I tend to stick to myself and just try to educate people as best as possible.
What advice would you give someone that is trying to get diagnosed or is has a new diagnosis?
Be your own advocate. Do as much research as you can. You know your body better than anyone else so if something feels off, keep searching!
According to The Mayo Clinic, “Familial Mediterranean Fever is a genetic autoinflammatory disorder that causes recurrent fevers and painful inflammation of your abdomen, lungs and joints. FMF is an inherited disorder that usually occurs in people of Mediterranean origin — including those of North African, Jewish, Arab, Armenian, Turkish, Greek or Italian ancestry. But it can affect people in any ethnic group.” To find out more, read the information page at The Mayo Clinic website.
The Arthritis Foundation also has some information about FMF. Check out the FMF page, HERE.
I want to thank Ashley Marie for being the first person to be featured in the Chronic Illness Spotlight series. Thank you for allowing me to share information about your journey with a rare Chronic Illness. I truly wish you the best as you embark on your new marriage!
Do you have a Chronic Illness that you would like featured in the Chronic Illness Spotlight? Just sent me a message and I will send the questionnaire to you. Together we can break the stigma of Chronic Illness!