Hi, my name is Somebodyelse! — Scope | Disability forum
New to the community? Remember to read our community guidelines and our community house rules.
Concerned about another member's safety or wellbeing? Find out how to let us know.

Hi, my name is Somebodyelse!

I'm a new member but I have so much to bring to the forum. Hopefully I can be of help to others as much as you can help me. These are terrible times for anyone living with a disability, whether it be physically or mentally. 
I have a condition called Ankylosing Spondylitis.The condition was diagnosed back in 1999. I have a couple of other problems, one or two genetic. 
X

Comments

  • chiarieds
    chiarieds Community Co-Production Group Posts: 10,614 Disability Gamechanger
    Hi @Somebodyelse - It's great to welcome you to this online community, which is both supportive & friendly. You will most certainly fit right in as many of us have varying disorders, yet share some common features, so help & support each other, so it's really good you also hope to help.
    I also have a genetic disorder (Ehlers-Danlos Syndrome), which has resulted in osteoarthrosis. My understanding is that Ankylosing Spondylitis may also have a genetic component. What other problems do you have?
    Is there any way you feel we might help you, as you mentioned this? Often other members here are able to offer help or advice. So, if you have any queries, please say.
    Please also look around the forum, perhaps using the 'All groups' link on the right, or join in with the 'Recent discussions' link below. I look forward to your input in the forum.

  • steve51
    steve51 Member Posts: 7,154 Disability Gamechanger
    Hi @Somebodyelse

    Welcome to our online community/family.

    I am also one of the Community Champion’s here at Scope.

    I suffered a Stroke in 1998 at the age of 32.

    This was caused by a rear condition (Brain AVM)

    It has “reached havoc” ever since.

    @steve51

  • emmarenshaw
    emmarenshaw Member Posts: 711 Pioneering
    Welcome to the community @Somebodyelse .
  • pollyanna1052
    pollyanna1052 Member Posts: 2,032 Disability Gamechanger
    Hello! Nice to meet you. Like me, you`ve had your condition a long time. What are the genetic conditions? Best wishes.
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,565 Disability Gamechanger
    Welcome to the community @Somebodyelse! Great to have you with us. :)
    Scope

  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,941 Disability Gamechanger
    Welcome to the community @Somebodyelse! How has your weekend been? :)
    Disability Gamechanger - 2019
  • Somebodyelse
    Somebodyelse Member Posts: 8 Listener
    Thanks for the lovely welcome everyone. Yes, Ankylosing Spondylitis is genetic. I began a long journey of operations and strong pain medication back when I was in my late teens although it has taken until recently for a consultant to finally give me the diagnosis. I was told many things, from a slipped disc and pulled muscles to Fibromyalgia. The latter had been on my notes for years even though I hadn’t been tested or even had a consultation, never mind had it mentioned by my GP. I went over 5 years at my previous GP without them even giving me an examination. I just had prescriptions. Since I moved my new doctor has been awesome. I’ve has steroid injections and wonderful medication on top of a referral to a specialist who diagnosed AS. The other genetic problem is Hemochromotosis. My liver doesn’t process iron. It builds up to dangerous levels in my blood. I go for regular Venesections that keep it safe and under control. It had done some damage before it was detected though. Like many of us, we all get add in’s as I call them, we get down and depressed, usually from the effects of meds or the struggle of life. That can be tougher than anything sometimes, tough on us and the people around us. Everything has its knock on effects.
  • chiarieds
    chiarieds Community Co-Production Group Posts: 10,614 Disability Gamechanger
    Hi @Somebodyelse - I'm pleased to read you eventually got some help & a diagnosis (or 2)! It also took me a long time to get my diagnosis. A locum staff health Dr I was seeing for lower back & sacro-iliac joint problems suspected this (but couldn't remember the name of it) when I was 20. I eventually looked into it myself, & met the founder of The Ehlers-Danlos Syndrome group, who lived nearby, who was sure I had it. Nonetheless it took several specialist appointments to get this confirmed. 
    I'm surprised how many people here have more than one problem; I thought our family was odd when I found we also had neurological problems as well....
    How are you coping at the moment? Please say if you have any questions too, & join in any other discussions. Thank you for saying more about yourself; it's good to share.
  • Adrian_Scope
    Adrian_Scope Posts: 8,105

    Scope community team

    Welcome to the community @Somebodyelse. I just wanted to say hi and hope you're settling in okay. Don't hesitate to let us know if there's anything we can do to help you fit in or find your way around! :smile:
    Community Manager
    Scope

    Concerned about another member's safety or wellbeing? Flag your concerns with us.

Brightness

Do you need advice on your energy costs?


Scope’s Disability Energy Support service is open to any disabled household in England or Wales in which one or more disabled people live. You can get free advice from an expert adviser on managing energy debt, switching tariffs, contacting your supplier and more. Find out more information by visiting our
Disability Energy Support webpage.

Fancy a chat in our virtual coffee lounge?

Put the kettle on and have a chat in our coffee lounge with other members. We talk about hobbies, games and anything else you can think of!

Cerebral Palsy (CP) Online Cafe

Here's a new opportunity for people with CP or a similar disability (aged 20+) to get together and chat. The sessions are in partnership with CP Sport so you can find out more and meet people from both organisations.

Are you struggling?

Read our 'Coping with stress, low mood and isolation' support thread for a run-down of ideas on how to banish those blues and feel happier.

What do you think about the community?

Complete our feedback form and tell us how we can make the community a better space for you.

Information about COVID-19

If you have questions about the virus, please read our information and support which includes guidance on benefits, getting food and essentials and Cerebral Palsy.

Back to school this September?

Read tips on how to settle back in and handle any worries you or your children might be having this new term.