LGMD "스포트라이트 인터뷰"

이름:  Vicki   나이: 44 yrs. old

국가: 캐나다

LGMD 하위 유형: LGMD2A/척추통증증후군

 

몇 살에 진단받으셨나요?: 

I was diagnosed at the age of 22.

첫 증상은 무엇이었나요?:

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.

다른 가족 중에 LGMD를 앓고 있는 사람이 있나요? 

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

LGMD와 함께 생활하면서 가장 어려운 점은 무엇인가요?: 

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. 

가장 큰 성과는 무엇인가요?:

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!

LGMD가 지금의 자신을 만드는 데 어떤 영향을 미쳤나요? 

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. 

LGMD에 대해 전 세계에 알리고 싶은 내용: 

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!

내일 LGMD가 "완치"될 수 있다면 가장 먼저 하고 싶은 일은 무엇인가요?: 

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.

 

* 더 많은 "LGMD 스포트라이트 인터뷰"를 읽거나 향후 인터뷰에 참여하려면 당사 웹사이트를 방문하세요. 에서 https://www.lgmd-info.org/spotlight-interviews