The story of Naziha
Hey my name is Naziha and I’m diagnosed not with one but two rare diseases
I have Hereditary Multiple Exostoses (known as HME, MHE or MO) and Hashimoto’s
When I was 8 years old my dad noticed a small bump on my finger, we went to the doctor, did a XRay and it lit up like a christmas tree. Doctors have never seen a case like mine, I had multiple bonetumors in my arm. They decided to do a full body Xray and they weren’t prepered for what they were seeing there. I had multiple bonetumors over my whole body (exept for my skull) The hospital sended me to a university hospital where I was diagnosed with multiple exostoses (which causes noncancerous bonetumors due a fault in my genes)
Due the HME I got severe chronic pain once I started growing. I have undergo 13 surgeries to remove some bonetumors and some bone recontructions. Ofcourse due the radionation of the xrays my thyriod started to give up which lead me to the diagnoses Hashimoto’s (which means that your thyriod doesn’t make enough hormones)
I’m now 17, I still have no medication that helps to the chronic pain and often I feel like a prisoner in my own body, chances are high i have to undergo more surgeries and I can’t walk (long) distances anymore.
I had a time when doctors were telling me that I was faking my pain for attention and i should live with the pain and saw me more as a goldmine but thank god I found now the right doctor who understands me and listens to me!
Never ever give up to find the right doctor who wants to listen! And ofcourse I have “friends” who will never understand my diseases that they are thinking you just want attention well I recently banned them out my life and it feels really good
I hope I will inspire some peoples with my story and raised some awareness for multiple exostoses and Hashimoto’s xo