Undifferentiated Systemic Autoinflammatory Disease
In 2017/2018 I started to get really sick. It started as feeling sick, extreme fatigue, rashes and joint pain. The symptoms would come on quickly and completely floor me. I couldn't make it through the day without sleeping. Then the symptoms disappeared just as quickly as they came.
I felt like I was constantly at the doctors. I saw doctors from different specialities including Neurology, Cardiology, Immunology and Dermatology. They did every test under the sun, MRIs, ECGs, nerve testing, blood tests. Looking into so many possibilities such as mould exposure, thyroid issues, iron problems, rare diseases from overseas, lupus and allergies. Each time it was the same discussion. "Yes your results are abnormal but nothing definitive. It looks like you are fighting a virus. Just rest." or "I am not sure what is happening to you, I can't help you."
This continued for years and the attacks became worse. Each attack affected a different part of my body or a different system. Some attacks were my joints, at times so bad I could barely walk. We lovingly called these attacks "my old lady hobble attacks." My skin attacks were so bad I couldn't turn my neck.
Childbirth was easier than getting the pain of the gut attacks. I was broken, devastated and barely functioning - I had to give up the career I loved.
In 2019 I hit rock bottom. I was laying in hospital after a heart attack and I didn't know if I would make it to see Christmas. I felt devastated that I would leave behind my young girls and husband.
Fast forward past numerous attacks, tears, lots of pain and many thousands spent on different specialists, I was lucky to find an incredible doctor who finally gave me an initial diagnosis of Familial Mediterranean Fever (FMF). After genetic testing I am now diagnosed as having uSAID (undifferentiated Systemic Autoinflammatory Disease).
With answers came a path forward and a treatment plan. With medication I am finally functioning relatively ok. I still have debilitating flares, but we know how to manage them.
My advice to anyone at the beginning of their diagnosing journey; don't give up and find the right doctors - they make all the difference!
Take your healing into your own hands, especially your mental health. I had to grieve the fact that I wasn't going to live a normal life; that simple tasks completely exhaust me, that I can't work a normal job and I say no to fun outings more than I say yes.
The grieving process allowed me to come to terms with my diagnosis and accept it. It has allowed me to become present and not take life, my family, friends or experiences for granted. And that is a gift.
And lastly - support is so important. You are not alone (even if we are rare).
Patient C. Australia. uSAID.
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