MDF Magazine Newsletter Issue 56 August 2018
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People<br />
Peer support: “I’ve been able to<br />
make new friends”<br />
Everyone’s experience of living with a muscle-wasting<br />
condition is different, but speaking with someone<br />
else having a similar experience can really help.<br />
Our peer support network can put you in touch with<br />
other people living with the same condition as you.<br />
You may have just been diagnosed, seen a change<br />
in your condition, or just want to talk about what your<br />
condition means for everyday life. …<br />
Laurie Wallis has oculopharyngeal muscular<br />
dystrophy (OPMD), a rare genetic muscle disorder<br />
that typically becomes apparent between the ages<br />
of 40 and 60. She says that peer support offered<br />
by Muscular Dystrophy UK helped her accept her<br />
diagnosis.<br />
She said:<br />
“When my OPMD was confirmed in 2003, it was<br />
a difficult piece of news to receive. I left the<br />
hospital without a nurse or anyone else checking that<br />
I was alright to go. I had nobody with me, and it was<br />
several hours before I called on a very good friend<br />
to share the news. I told him I’d just been diagnosed<br />
with muscular dystrophy and then just burst into<br />
tears.<br />
“There was no professional help or support offered<br />
to me. That’s why I found out about MDUK, the work<br />
they do, and the support that is available through<br />
their regular group meetings. I have been proactive<br />
about attending the Muscular Dystrophy UK meetings<br />
when I can, and I’ve been able to make new<br />
friends as a result. I don’t want anyone to be left<br />
without the right amount of help and support when<br />
they need it.”<br />
There are lots of other ways to find support. You can<br />
attend our local meetings of Muscle Groups, who<br />
meet all over the UK to get support and advice on<br />
conditions, find out about local services, and meet<br />
other families. Together with our new Afternoon<br />
Teas, they are a great chance to meet other people<br />
near you. …<br />
And if you are young disabled person, our 700-strong<br />
Trailblazers network is a great way to meet other<br />
people, and join our campaigns and meetings. As a<br />
first step, you can join our busy group on Facebook<br />
now.<br />
Article online at: https://www.musculardystrophyuk.<br />
org/your-stories/peer-support-ive-been-able-tomake-new-friends/<br />
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