Femoral Facial Syndrome
JoelTheGiant
Scope Member Posts: 10 Connected
Hi. My name is Joel, I'm 19 and I have a rare condition called Femoral Hypoplasia-Unusual Facies Syndrome (FHUFS). It means that my femors (upper leg bones) are very short. I also have a load of other symptoms because it's a syndrome. These include club feet, fingers that don't straighten, small ears, cleft palette and scoliosis.
0
Comments
-
Welcome to the group @JoelTheGiant i'm loving the user name.
Hope you get chance to have a good look around the site, i look forward to seeing you around.0 -
Welcome to the community @JoelTheGiant How's your weekend been going so far?
Thank you for giving an explanation of your condition. I don't think I'd heard of FHUFS before, so I found your description helpful! How do you find living with FHUFS?0 -
Hi I was intrigues by your condition of FHUFS as I have never heard of this but there is some simularities to my condition which is bilateral Proximal femoral focal dyficiency (PFFD) especially the short thighs. I never had a diagnosis until I was around 55 years old and it was me who approached professionals and pointed out the characteristics. My GP first dismissed it but eventually referred me to a surgeon who never said I had the condition just spelt out the anomilies in my body. It still leaves me with the question as to is this the name of my condition or am I missing something.0
-
Tori_Scope said:Welcome to the community @JoelTheGiant How's your weekend been going so far?
Thank you for giving an explanation of your condition. I don't think I'd heard of FHUFS before, so I found your description helpful! How do you find living with FHUFS?
I'm a full-time wheelchair user although I do often get out of my chair and move on my hands.
It took me a while to embrace my disability but now I'm quite proud of being disabled and I wouldn't want to be able-bodied.0 -
littleacorn said:Hi I was intrigues by your condition of FHUFS as I have never heard of this but there is some simularities to my condition which is bilateral Proximal femoral focal dyficiency (PFFD) especially the short thighs. I never had a diagnosis until I was around 55 years old and it was me who approached professionals and pointed out the characteristics. My GP first dismissed it but eventually referred me to a surgeon who never said I had the condition just spelt out the anomilies in my body. It still leaves me with the question as to is this the name of my condition or am I missing something.0
Categories
- All Categories
- 13.7K Start here and say hello!
- 6.7K Coffee lounge
- 52 Games den
- 1.6K People power
- 36 Community noticeboard
- 21K Talk about life
- 4.8K Everyday life
- 2.2K Families and carers
- 797 Education and skills
- 1.7K Work
- 387 Money and bills
- 3.2K Housing and independent living
- 811 Transport and travel
- 635 Relationships
- 56 Sex and intimacy
- 1.3K Mental health and wellbeing
- 2.3K Talk about your impairment
- 836 Rare, invisible, and undiagnosed conditions
- 886 Neurological impairments and pain
- 1.8K Cerebral Palsy Network
- 1.1K Autism and neurodiversity
- 33.7K Talk about your benefits
- 5.4K Employment and Support Allowance (ESA)
- 17.9K PIP, DLA, and AA
- 5.6K Universal Credit (UC)
- 4.7K Benefits and income