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15-year old son has Becker Muscular Dystrophy

juliejackjuliejack Posts: 3Member
edited September 2016 in Parents and carers
I have a 15 year old son who has Becker Muscular Dystrophy. It's a degenerative condition causing muscle weakness and wasting. I wonder if there are any other people on here who's child has a similar condition?

Replies

  • I recommend you check out www.musculardystrophyuk.org 

    They can put you in touch with individuals who have the same/similar conditions.

    Also your son may benefit from joining their young people's network where he can meet other's with muscle-wasting conditions https://www.facebook.com/groups/mdctrailblazers/ 
  • juliejackjuliejack Posts: 3Member
    Thank you, we are already involved with MD UK. I will let my son know about the young people's network.
  • JadeBJadeB Posts: 62Member Courageous
    Hi @juliejack I have met many young lads with MD being a support worker. I work in many places one of which is trellor college. The young lads I have met are all amazing and deal with thier condition very well as do the carers that look after them. Wish you all the best x
  • juliejackjuliejack Posts: 3Member
    Thanks Jade xx
  • Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team
    Hi @juliejack how are you getting on? Have you managed to meet any other parents of children with Becker Muscular Dystrophy?

    Scope
    Senior online community officer
  • Clare123Clare123 Posts: 1Member
    Hi  Julie .I have a son 28 with MD type Facioscapulohumeral. He has similar conditions .Most of his muscles have deteriorated and he's just having to start to use a wheelchair to get around.
  • LDNUMBERPAINLDNUMBERPAIN Posts: 21Member Connected
    Hi My son now in his 30's has advanced Becker (BMD) and has been wheelchair dependent for many years. He is now in 24/7 care with an excellent support team, unfortunately  his wheelchair does not get the same TLC because the NICE guidelines only apply to medical care quality and as a result he has direct responsibility for maintaining it at his own expense. As many wheelchair users know a common problem is that the electrics are sensitive to cold damp conditions causing a very irritating cut out.

    Being unable to resolve the problem the company that usually upgrades his wheelchair decided he could no longer use his own hand control outside his house (inside the temperature is controlled) and pottering around his fully adapted home does not overload the electrics so he is now totally dependent on his care team if he wants to leave the house for any reason, makes no sense of what the PM meant by giving everyone more control over there own lives.
    LDNUMBERPAIN
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