Mina Rajan is Canadian and has a background in Nutrition and Information Technology and first-hand experience with the rare autoimmune blood clotting disorder, acquired thrombotic thrombocytopenic purpura (aTTP). She currently helps with her family’s business and provides support to her elderly parents. Mina is passionate about health, and loves to travel and hike in the Canadian Rockies. Below are Mina’s responses to a few questions about her experience with aTTP.
1. How were you diagnosed
If I had not gotten a second opinion, I would not be here today. I was 32 years old with two young children, 6 and 4 years old. It started with a cold virus and I had trouble going up the steps in my home. My family doctor at that time said, “not to worry, the low platelets will normalize in a few weeks”. I was fine with that answer but my husband was not. The next day, his family doctor sent us to the emergency department. I was admitted right away and very fortunate that the hematologist on call quickly diagnosed me with aTTP. By then, my platelets were below 10,000 and I had petechiae (small round spots on the skin as a result of bleeding) all over my body.
2. What happened after your diagnosis?
The doctor was not confident in saying that the treatment would work. My husband and I became very emotional. It was fear of the unknown. Would I survive this disease? A line was inserted into my jugular vein in my neck. I was taken to the intensive care unit (ICU) for plasmapheresis and given a corticosteroid. The ordeal was very traumatic and our life was turned upside down. I was hospitalized for one month and then re-admitted the same year because of a relapse. It was extremely hard for my family and being away from my children. It took a couple of years to get back to a normal life.
3. How was life before vs. after treatment?
Before treatment, I was a healthy person who worked out three times a week and ate healthy foods. After my treatment, I felt like someone had placed me in a washing machine. I was drained, extremely tired, and my memory and vision had deteriorated. I developed central serous retinopathy (a condition associated with blurry and distorted vision) and my appetite increased. I gained 40 pounds and needed to get back to my healthy weight. The weight gain caused not only physical but emotional stress, as I was not confident with my physical appearance.
4. What unmet needs do you believe still exist for TTP patients?
I believe that a strong support group in each county is essential. Because TTP is a rare disease, creating a support group seems to be a challenge. I am encouraged by the pilot virtual peer support series that the patient group, Answering TTP Foundation (AnsweringTTP.org), started to connect and support the community via video conference. Also, I would like to see more initiatives on TTP (clinical and general) to give the community hope for better treatment and maybe one day a cure.
5. Where do you access support and how important has that been for you?
I am very thankful that Answering TTP Foundation (AnsweringTTP.org) existed when I relapsed in 2010. Having Syd (Chair of Answering TTP Foundation) at the time of my relapse was a godsend. We seemed to be out of treatment options, and I was not getting better. The Foundation’s Medical Advisory Network connected with my physician to share new treatment options and I recovered.
The Foundation has done so much for the TTP community including a simple educational brochure for newly-diagnosed patients. I would have loved to have had access to the piece when I was first diagnosed. During that fearful time, it would have provided me with peace of mind and connectedness.
6. February 28, 2018 is Rare Disease Day—is there any advice for other aTTP patients you want to give?
Be positive and think of the survival rate! Recovery time is very long but there is still life afterward. Reach out to a support group like Answering TTP Foundation; you are not alone. Get involved with the Foundation and you will be helping other patients like yourself and the medical community to diagnose the rare disease earlier and perhaps one day find a cure. Every year, I participate in the Walk to Answer TTP Together to raise awareness and funds in my local community. It makes me feel good to do something that will help improve the odds for all those affected by TTP.
Rare Disease Day 2018
understandingTTP supports Rare Disease Day