The story of Rebecca
I’m 19 years old and I have seizures, falls and involuntary jerks. I have no warning I just blackout. I have been on medications which made it all worse.
it affects my whole life I’ve had to change career choice because my health has got a lot worse since 2015 when the doctors put me on the wrong meds.
i just get on with life, I still got to college and study level 3 IT. when I fall or have a seizure I just get back up and just get on with things.
i do get scared sometimes and I am still fighting for a diagnosis. Doctors know i have a rare genetic disorder but still don’t know which one. i do use my studying as an escape from the health issues have.
i learn from the bad points in my life and the times I lay in a hospital bed.
Doctors said I Will find out what it’s called and how to deal with it. the diagnoses will be life changing. knowing how to deal with it and to Tell people. Also, It will help me understand and not be afraid anymore to get some of the old me back.
there are days that i look fine and others i rely on crutches to get around. some days I’m in pain but still get up and do my normal college day. It took me a while to accept that i needed crutches as before I become ill in 2015 I had never had to think about using them.
I don’t like to let my illnesses get to me too much I have learnt to get back up and just carry on. I don’t have any other choice really.
It does scare me that as I don’t have much warning before a collapse. I have almost broken both ankles 3 times and sprained them so many times now I’ve lost count. I will keep fighting for my diagnoses of my genetic disorder hopefully, it will be soon.
i aim to help others by telling my story and sharing my experiences and to know I’m not alone and other people are still fighting for a diagnoses upsets me
Visit the Undiagnosed Disease Online Community – RareConnect.org