The Educated Patient

Taking a Risk with a Chronic Condition

Change direction with a Chronic Condition

I have a very rare genetic condition that is not well understood. There is no cure and no therapy. It can present at any age, with varying degrees of severity and in many different ways. My first child died from this disease, and everyone in my very large extended family carry this same genetic defect. Given this grim health prognosis, why would I not want to change direction with a chronic condition?

I am aware that publishing this blog means I am sacrificing any hope for medical privacy. I may even be compromising my ability to obtain life insurance going forward. The reason I am taking on this disease in such a personal and public way is because at the end of the day, every disease or chronic condition is personal. It’s not just about the hospitals, scientists and medical teams working to further research, it’s also about the parents and the children, the spouses, sisters and brothers who all suffer with the patient on a daily basis.

How to change direction

I decided to change what I could; to figure out what epigenetic (lifestyle and environmental) factors I could change, and then to change them. By doing so, I was able to improve my quality of life and regain the majority of my health back. In my case, it was a successful intervention. I have never taken medication for this condition. have had no further surgery and yet I can now say that I am in the best health of my life.

Categories: Research, Risk


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