I will try my best to explain my mothers and my own story with Cowden’s Syndrome. My story is one of grief, knowledge, redemption, and hope for better future for people such as myself affected by this condition.
I never knew my birth father, so I think it’s fair to say my mother was like a rock to me. Her health problems started at age 11 with a Thyroid operation which was followed by problems with her breathing and throat which for a period was considered normal because we were unaware that it was a problem for her. It was almost like a part of her personality! She had surgery again on her thyroid in her 40s, and it wasn’t until she was 50 that she was diagnosed with Thyroid cancer and five years later a Cowden Syndrome diagnosis. My Mom’s disease and cancer diagnosis impacted her severely with it spreading to her hip and lungs in the end with also a benign tumor in her brain. Her mental well-being was affected as well with her having to take antidepressants.
Looking back, it took a lot out of her, but she still wanted to do the things she enjoyed even though they maybe weren’t right for her health! I remember feeling helpless and frustrated that I couldn’t do much to help her. I can recall a conversation where I said I don’t know what to do but I always listened to what she said when she needed support which I hope she appreciated. She gave me a letter shortly before she passed away with details of how to get tested for Cowden’s as she informed me of the details about it. At the time I couldn’t face the possibility of what this may bring, but since she passed away, I realized how important this letter was. She was giving me the potential to be an advocate for my health. I got tested and found out that I had CS then shortly after got my daughter tested and fortunately, she doesn’t have it. I’ve slowly been sorting out my health in the past year with screenings done, specialist visits, and I attended the PTENUKI event in London last year, met with people affected by Cowden Syndrome and started to get involved with charity work for PTENUKI.
Cowden’s has given me some of the answers to my mother’s health problems which had been with her for a long time. It has been something I haven’t always wanted to face up to regarding my mother and myself because Cowden Syndrome was the reason for my mother’s declining health and the loss of her. I suppose the only good thing to come out of this loss is with an early diagnosis she has helped me possibly have a better future. She has left her legacy that has now given me knowledge, PTEN support, power, and proper education to look after my health and take advantage of all the opportunities that she and others with the same condition to her haven’t had.