In my short life i learned there is so much more than we see. And its not always as it seems to be. I learned a lot about pain, losing, giving up and being hopeless. But i also learned to stay strong.
Everybody has a story to tell. I wanna tell you mine.
When i was 3 my parents noticed i was different. I wasn't able to walk as 'normal' kids did. So they decided to go to the doctor. He couldnt find anything.
When i was 5 the pain came and didnt left me. We visited many doctors in many different cities, but no one was able to find out about the reason of my pain. I had a lot of therapies and there were so many doctors that did bad mistakes - they are kinda the reason why i had to wait so long for my diagnose (but im not mad at them, thats also not helpfull). Yeah my pain and health got worse: i could barely walk, my growth slowed down more and more and i often needed breaks cause i was weak. Well, the search for help went on, until 2011: we finally found out what kind of disease i have. And surprise surprise: its extremely rare (only 200 patients in Europe, 1000 world wide). It's a metabolic disease which makes my body lacking an enzyme and causes pain in my joints and which is destroying them in an irreversible way. Because its so rare nearly no pharma concern wants to research for a medicine, cause it would be too expensive. In 2012 i was so lucky. There finally was a pharma concern that found out about an infusion which could give people with my disease the enzyme which is missing. I was very lucky that i was able to get in the study where they tried out how it helps and ... yeah.
Now i get this infusion weekly. Its finally an approved drug and luckily im living in germany where i dont have to pay the money for it on my own (its so freakin expensive). If you would ask me how i feel with that: its really hard. I will never be healthy and i will never be better, but i live. I am lucky with my family which helps me in every possible way:) I want you to know, that you always have to believe in you. Never give up, never lose hope. I needed more than 10 years to find the reason for my pain and weakness. Its never too late to start with a therapy. ⬇️⬇️⬇️