06/24/2016

"مقابلة في دائرة الضوء"

الاسم:  Donna-Marie      العمر: 32 سنة

البلد: United Kingdom

النوع الفرعي LGMD: LGMD2i

في أي عمر تم تشخيصك:

I stared tests at 12 years old, had a Muscular Dystrophy diagnosis at 13 and the subtype a few years later.

ما هي أعراضك الأولى:

Generally being slower than other children in PE lessons. My teachers noticed that I couldn’t keep up but knew I was too much of a goody two shoes that I had to be trying my hardest!

هل لديك أفراد آخرون من عائلتك مصابون بداء تضخم الغدد اللمفاوية الجنيني:

Nope, I’m 100% unique J

ما هي في رأيك أكبر التحديات التي تواجهك في التعايش مع داء الليثيوم المتعدد الكيسات؟:

The greatest challenge for me is how it affects me mentally; I know that I am lucky with my LGMD and that I could have much bigger problems so I try not to complain too much about it but  I did spend a couple of years wanting to hide from the people who stare at me and my limp. My boyfriend of 4 years has changed my attitude to my disability more than I could have ever imagined and although I don’t care about people looking at me anymore, I sometimes struggle when we go out as I feel embarrassed for him when people stare at us and feel like he should be with someone “normal” at his age.

I also hate that I can’t storm off during an argument, especially if I’m sat down on a low chair, ha ha!

ما هو أعظم إنجازاتك:

I’d love to say that my greatest achievement is something to do with a career but I have to say that in that department I don’t have much to brag about. But I find it an accomplishment that I manage to keep going and stay positive. I have a modest career but I do still work and socialize.  I don’t try to hide away anymore feeling like Quasimodo!

كيف أثرت عليك LGMD لتصبح الشخص الذي أنت عليه اليوم:

LGMD has made me grateful for the amazing people I have in my life. I could not wish for a better family, partner or friends.

ما الذي تريد أن يعرفه العالم عن LGMD:

I’d like the world to know that LGMD doesn’t affect my brain or my eyes!

I don’t need to be talked to like a child and I can see the nudges, whispers and stares.

 

إذا كان من الممكن "علاج" مرضك بالتهاب الغدد اللمفاوية الروماتيزمية غدًا، فما هو أول شيء تريد القيام به:

There are so many things I could list here but the truth is that I think the very first thing I would do is go out and celebrate with as many drinks as I could handle and not worry that if I fall down, I stay down! And maybe throw in dancing on a few bars J

But as that was a pretty rubbish answer I’d like to add that afterwards I’d go away on a nice holiday with my boyfriend and family where none of them had to worry about if the ground was too uneven, or if there are any steps, or that I can’t walk on the beach or get in/out of a pool or up from a chair.

 

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