In this special Rare Disease Month edition of “Where Are They Now”, we caught up with Zahra Alidina. In 2023, Zahra shared what life was like living with an autoinflammatory disease that is so rare it doesn’t even have a name. We’re so honoured to share this update from Zahra below.
Hi C+F community! My name is Zahra, and I have Undifferentiated Systemic Autoinflammatory Disease (USAID). I have had quite the rollercoaster over the last couple of years since my original blog post. My original biologic stopped working, leaving me very sick and I tried several Disease-modifying antirheumatic drugs (DMARDs), a Janus kinase (JAK) inhibitor and another biologic. I am finally more stable on a combination of immunosuppressive medications, and I am almost done with my undergrad which is really exciting!
I recently went to the National Institutes of Health (NIH) in the USA to try and figure out a diagnosis beyond ‘undifferentiated’. It has been a process learning to live and accept an undifferentiated diagnosis. My rheumatologist constantly reminds me that controlling my symptoms and improving my quality of life are more important. While I am so happy to be relatively stable in terms of my disease, I really would like an official name. It can be difficult to cope with an illness that has flipped my life upside down, but I still do not have a name to give it. For all those out there who are struggling to get a diagnosis, your symptoms are still valid, and you are not alone.
Living with a rare disease comes with many challenges, both emotionally and physically. It is important to do things that fill your cup. For me, that’s hanging out with my friends and reading (I read 52 books last year and hoping to break my record this year!). I have also found power in sharing my story and connecting with others in similar situations (which C+F is a great resource for!). I do a lot of patient advocacy work which is incredibly meaningful to me, and I have made lifelong friends in the process. Find things that make you happy and hold on to them. Be kind to yourself and remember, you are your best advocate!
