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Hi, my name is Marfandan!

MarfandanMarfandan Member Posts: 1 Listener
Hi I suffer from a Skeletal/connective tissue syndrome called Marfans I am 48 years old have been diagnosed since I was 10 years old, I have damage to my spine, c4-c7 t3-t4 l5-s1 also have dural ectasia, all this has led to problems with pain/numbness in my legs, which in turn make walking difficult, I also have both heart valves leaking, which is putting pressure on my Aorta, monitoring on this done yearly, I am in receipt of Motablity  care P.I.P on universal credit, my wife is carer although she suffers with fybromyalgia as well as depression/ anxiety. 
Just would like to thank you all for excepting us onto this group.   

Replies

  • AilsAils Community champion Posts: 2,268 Disability Gamechanger
    Hi @Marfandan, I would like to welcome you and your wife to the Community.  It's nice to meet you both and thank you for sharing your story with us.  It is great to have you here so thank you also for joining us.  I'm sorry to hear about all your health issues and hope you and your wife are keeping safe and well during this difficult time.

    We all have varying disabilities and health issues on the forum and all support one another and this is never more so than at this particular time.  We are all here to support you and your wife so please chat to us anytime as there will always be someone on here to listen.  Please feel free to have a look around the site and join in any discussions that interest you.  We are a friendly bunch of people on here!  A good place to start chatting is our virtual Coffee Lounge where we talk about such things as our pets, hobbies, movies, books, etc so I hope you will be able to look at that too.  I look forward to seeing you on here and hope you enjoy being part of our Community.  If we can be of any help or support to you both then please just let us know.  All the best.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • Ami2301Ami2301 Community champion Posts: 7,139 Disability Gamechanger
    Welcome to the community @Marfandan :)
    Community Champion
    Disability Gamechanger - 2019
  • chiariedschiarieds Community champion Posts: 6,896 Disability Gamechanger
    Hi @Marfandan - Welcome to this friendly & supportive community from me too. Myself, & family have Ehlers-Danlos Syndrome (EDS) which, as you probably know, is also a hereditary connective tissue disorder. It's very nice to 'meet' you, as, in the 9 months I've been here, you're the first person I've come across with Marfan Syndrome. There are many people that have joined Scope however that have EDS; mainly the hypermobile type (hEDS).
    Now that might seem a strange thing to say, but my son had the geneticist (who specialised in connective tissue disorders), tho apparently willing to say we both had hEDS, keep saying he couldn't rule out a fibrillin-1 defect in him. His rheumatology colleague even said he had 'marfanoid EDS.' We both have arachnodactyly, which is more pronounced in my son. So, we're sort of in-between. I had a fight to get my son a 2nd echocardiogram (it took 4 years), but now thankfully we both get an annual M.O.T. (echocardiogram).
    I'm very sorry to read you have dural ectasia, as I understand that to be incredibly painful, as is the fibromyalgia your wife suffers from.
    As Ails says, we are all here to support you both if we can. Many of us here suffer pain, etc., with our varying disorders, but, most importantly, we care about each other, so I'm very pleased you have joined this 'family.' :)

  • Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,940 Scope community team
    Welcome @Marfandan. :smile:
    Senior Community Partner
    Scope

    If you have a few minutes to spare, we'd appreciate your feedback on our online community.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    Great to have you with us @Marfandan
    Community Partner
    Scope

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