- Fibrous Dysplasia
- Interviews
Jacquie goosetree's interview
How did all start?
I was born with polyostotic fibrous dysplasia of the skull. When I was born I had operations on both my eyes, after that by the time I was 2 it was discovered I was partially deaf. Then as I was growing up I had a lot of pain in my ears and each time my ears were hurting I was losing some hearing. Then I had teeth growing in the wrong place so I had to have these ones taken out and then I had these lumps in my mouth which was also at the same time as having bad pain in my face. I went to guys hospital to get them to check it all out then they done an xray which showed them my condition. I had more operations to remove bone from my sinuses and skin from the roof of my mouth, now I need another operation on my ears to relieve the pressure. I have it on both side of my skull but the left side is worse than the right. I still suffer a lit of pain and swelling which means I cant wear my hearing aids and can last for months or sometimes weeks.growing up with this condition and not knowing about it meant that my skull grew wrong and I now suffer with chronic underventilation of the sinus area.
Do you already have a diagnosis? How long did it take you to get it?
The xray showed a lot of it so it was not ignored and was acted on straight away. But I was treated like a hypochondriac till i was in my 20s till i took myself up the hospital and they took me very seriously
For what medical specialties have you been treated? What has been the most useful specialty for your?
Operations is all they can do and i have had many and dont particularly want any more. I have learnt to deal with the pain and adapted my life around this illness without even realising i have done it.
What has been the most useful thing for you so far?
The operations. Nothing else I deal with this on my own. I was in my early 20s when I took myself to hospital and told them what I have suffered all my life.
What have been your biggest difficulties?
Nit being in pain is difficult I am always in pain sometimes nit much others tremendous pain.
How has your social and family environment reacted? Have your social or family relationships changed?
No I dont have much friends or family I have been on my own with this all my life.
What things have you stopped doing?
Going out. Being sociable. Working anything at all. I feel too tired to do anything as I am constantly battling pain and hearing loss I am now profoundly deaf. I cant see properly either so I dont have confidence and my face is not nice because I have what looks like bony horns on my forehead.
What do you think about the future?
Pain
So far, which years have been the best years in your life? What have you done during them?
The best years were when i was 18 and my parents threw me out because they didnt know what was wrong with me and accused me of being miserable and crying for nothing all the time as far as they were concerned. I was in pain and didnt understand why crying about that was naughty so it made my relationship be a bad one with my parents.
What would you like to do if you didn’t have your condition?
Be normal live a normal pain free life
If you had to describe your life in a sentence, what would it be?
I use laughter as a way of forgetting my problems but I have too many health issues that affects me for me to be any good to anybody.
Finally, what advice would you give to a person in a similar situation?
Talk be honest about the way your suffering dont suffer in silence.
