Hi, my name is TheAlien! — Scope | Disability forum
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Hi, my name is TheAlien!

TheAlien
TheAlien Member Posts: 42 Courageous
Hello all,  I'm new to this so please forgive me if I make any mistakes.

I live along and cope as best I can with a physical disability, a long term health problem and mental health problems.  I won't go into details, but the physical disability is a very rare inherited one.

Comments

  • Sandy_123
    Sandy_123 Member Posts: 1,991 Pioneering
    Hi @TheAlien welcome  to the forum,  join in with the many topics or games. I have a physical disability too but it's not rare. 
  • TheAlien
    TheAlien Member Posts: 42 Courageous
    Hi Sandy, thanks for the welcome.

    Apparently mine is 1 in 50,000 and I've even had a GP Google it in front of me which didn’t exactly inspire confidence, lol.

    I'm going to have a good look around.
  • Sandy_123
    Sandy_123 Member Posts: 1,991 Pioneering
    GPS do use Google they've done it infront me on accasion. 1 in 50,000  :o .
  • Teddybear12
    Teddybear12 Member Posts: 765 Pioneering
    Hi @TheAlien I hope you enjoy being part of the Community. Please join in.
  • chiarieds
    chiarieds Community Co-Production Group Posts: 10,579 Disability Gamechanger
    Hello @TheAlien - & welcome to the community. Thank you for joining us all. I also have a genetic disorder (Ehlers-Danlos Syndrome), & 20 years ago the incidence was thought to be 1 in 20,000; 10 years later, 1 in 10,000, & currently 1 in 5,000, so things can change. I also have a neurological disorder, the chances of this happening considered to be just over 3 million to 1 if they weren't associated in some (i.e. Ehlers-Danlos Syndrome + Chiari 1 Malformation).
    Now, it's up to you, but if you did feel inclined to mention the genetic disorder you have perhaps we can help, or another member may also have this; it happens. I'm a long retired physio, but my understanding of some medical matters helped me research when many Drs I'd seen didn't know what was the matter with me. I can appreciate Drs Googling really doesn't inspire confidence as I've had that too; one was a Senior Registrar. Please don't say what your genetic disorder is if you feel uncomfortable with this, but if you do, I don't mind trying to find whatever I can, as the Scope team will also do.
  • TheAlien
    TheAlien Member Posts: 42 Courageous
    Thanks @chiarieds, I have diaphyseal aclasis, I also have ptsd and kidney problems.  The DA is severe, with multiple osteochondromas impeding tendons,  muscles, veins and nerves.

    Until the pandemic stopped it, I was a volunteer patient for trainee orthopaedic consultants so they could have a better understanding of it.
  • chiarieds
    chiarieds Community Co-Production Group Posts: 10,579 Disability Gamechanger
    Thank you for your kind reply @TheAlien - I have a little better understanding now, & will look into this further tomorrow. I have a solitary bony overgrowth/exostosis from my right kneecap, which can be problematic. I appreciate you're facing much, much more. A quick look for now brings up the following, which may be worth looking at if you haven't already found it: https://www.nhs.uk/services/service-directory/hereditary-multiple-exostoses-hme-support-group/N10498192
    It's great you were a volunteer patient helping trainee Orthopaedic consultants better understand your disorder. I offered to talk to my GPs about Ehlers-Danlos Syndrome, plus the fact in a few of us it can be associated with Chiari 1 Malformation, but was told they didn't have the time!
    I'll let you know if I find out anything helpful tomorrow. Thank you for saying the genetic problem you have; we're all here trying to support & help one another. As far as I'm aware we don't have another member with Diaphyseal Aclasis; we do have several members that are suffering due to PTSD however.
  • chiarieds
    chiarieds Community Co-Production Group Posts: 10,579 Disability Gamechanger
    hi @TheAlien - you likely know more about this than me, but I've been having a look, & reading quite a bit about your disorder, which unsurprisingly I hadn't come across before. It seems that Diaphyseal Aclasis is known by a few names which have kept on being updated as can be seen here: https://www.ncbi.nlm.nih.gov/books/NBK1235/  so now it seems to be called Hereditary Multiple Osteochondromas. Previously this had been called Hereditary Multiple Exostoses, but Osteochondromas is now used as being more correctly descriptive. No wonder your GP had to Google!
    However these different names brought up a USA based website, which seemed most informative. Please see: https://www.mherf.org/
    Hoping some of this may be of interest, & thank you for educating me too. :)
  • TheAlien
    TheAlien Member Posts: 42 Courageous
    Hi @chiarieds, thanks for the links.

    You can probably see from the xrays and photos why I refer to myself as an alien.  Most people think I must have been dropped from outer space and had a bad landing, lol.

    The terms HME and HMO I think are American in origin, as its been on my records as DA since I was diagnosed as a child, which was many years ago now.  

    I learned quite a bit from being a volunteer patient.  It was my consultant who initially asked if I would be happy to be seen my students.  It may be worth telling your consultant that you are happy to seen by students if they have a teaching hospital nearby.

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