"مقابلة في دائرة الضوء"

الاسم:  Vicki   العمر: 44 yrs. old

البلد: كندا

النوع الفرعي LGMD: LGMD2A / اعتلال الكالباينوباثي

 

في أي عمر تم تشخيصك: 

I was diagnosed at the age of 22.

ما هي أعراضك الأولى:

I was having difficulty climbing stairs.  The Doctor told me that the tendons in my ankles were short, he then sent me to a neurologist for a second opinion to see if there was an underlying condition as to way they were short.  My neurologist sent me to have a muscle biopsy in Montreal.

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

No, I am the only person with LGMD in my family.

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

There are many challenges; to stay independent alone in my home, and to stay active in my community and with friends.  It is challenging when planning to go somewhere new.  I have to ensure it is accessible for a wheelchair and I have to ask about the washroom facilities.  It is also challenging to stay positive- when you can’t perform an ordinary task, go somewhere you want to go, or just see others moving so easily in public. 

ما هو أعظم إنجازاتك:

My family is my first great accomplishment- My husband, Dean, and our son, Tyler.  They make my life worth living; they make me feel like I can do anything.  I am very blessed.  I also take great pride in my MD fundraising.  In the past, I have organized a yearly auction, online FB auctions, yard sales, raffles, etc.  My latest idea has been making and selling felt ornaments.  I started making them January 2016.  I design a pattern, cut it out on felt, hand sew them together then market them on Facebook. They have their own FB page: “Vicki’s Handmade Ornaments for MD”.  My husband and I have donated all the supplies to make them, I have even gotten business cards.  ALL proceeds from the sale of the ornaments go to MD Canada every year in June for our Walk for Muscular Dystrophy.  Since starting I have sold ~$4000 worth of ornaments.  My fundraising goal for the walk for MD has been $6000 for the past many years.  I always find a way to exceed my goal.

My husband and I started a healthy eating regime back in March.  We have both gotten lighter, and healthier because of it.  I was able to stop taking the 3 medications I was taking for inflammation, pain and high blood pressure.  We feel great and I love to spread the word about it!

كيف أثرت عليك LGMD لتصبح الشخص الذي أنت عليه اليوم: 

I am learning more and more about myself every day.  My challenges and past experiences have made me learn so many things about myself.  I have learned to love myself for who I am and not for what I can or cannot do.  I have become a strong, self-confident person.  I have realized that I am who I am and the wheelchair does not define me!  I also belong to a local disability group.  We go into middle schools every Spring and talk about living with a disability, and how you can help people with disabilities.  My public speaking has come a long way because of this. 

ما الذي تريد أن يعرفه العالم عن LGMD: 

It is rare but it is also a common disability.  Some of us liked to be offered a helping hand, some like to do it themselves however difficult it may be.  Everyone is different.  Ask before helping someone and never be turned off by someone with a negative attitude or personality.  I always smile because I know what I have in my life and LGMD cannot take my smile away from me!

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

There are probably many things that I would do: travel, swim, run, go shopping on my own, work, exercise, visit my friends’ houses with stairs, get in and out of the bathtub, clean the house, I am sure I could come up with a long list…  A lot of these things I can do now, but in a modified way.  It would be nice to do these things without thinking, in a more carefree way.

 

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