My name is Sarah King and I have three separate rare conditions, Cowden’s Syndrome, Benign Intracranial Hypertension, Spina Bifida Occulta as well as Type 1 Diabetes.
I was diagnosed with these conditions progressively throughout my life. I can’t explain what it’s like to know that your body doesn’t work properly even though I look fine on the outside. When I explain my conditions to people, I often get told I don’t look sick. Most people I meet don’t know what to say and to be honest I don’t blame them; sometimes I am lost for words also.
These conditions have impacted both my sister’s life and mine. I would just like to be like every other 20 something year old; and live my life the way I want. I would love a life that is not constantly spent at the doctors looking for problems. The doctors always told me that preventing the problems associated with these conditions is better than the treatment. To a certain extent they are right but like anything, it comes with a cost. The constant worry and fear that this will be the time when prevention turns to treatment or is it the next time?? Will I pass this on to my children someday? Will it ever be cured?? Who can understand me when very little is known about my conditions? Most of the time I don’t have a satisfactory answer.
These conditions also affect my sister in so many ways; we spend most of our time trying to afford my medical costs. My doctors do the best they can despite the lack of information. I have to travel significant distance to access the doctors I need even though I live in South QLD. All I want is for people to understand that despite everything, I’m just the same despite all the challenges I have. I would love the opportunity for greater support in QLD or at least for people to understand that these conditions are hard and impact my friends and family too. Meeting people with other rare conditions helps and when this happens I feel like we are all not fighting these battles alone.