Friday, July 4, 2014

Eva's journey with Limb-Girdle Muscular Dystrophy

When it comes to sharing my story it has allowed me to connect with others who have also been affected by Muscular Dystrophy. This includes those living with BMD as well others living with other forms of Muscular Dystrophy as well. So as the My Becker's Story blog enters its fifth year it is my plan to raise more awareness by inviting others to share their personal stories. Recently a friend of mine Eva Olala who is the Founder of Muscular Dystrophy Awareness of Kenya asked if she could share her story. So today I invite you to read Eva's story of living with limb-girdle muscular dystrophy and her efforts to raise awareness in Kenya, East Africa.

Eva's journey with Muscular Dystrophy

I live in Kenya a beautiful country in East Africa known for its beautiful landscape, National parks and hospitable people.
At the age  of 8 years, something happened to my nerves I remember feeling pain and my body was also shaking uncontrollably I had no fever though I couldn't see it myself people around me especially my parents saw something was out of the ordinary. After a few days without change my parents decided to take the trip to the hospital and to their surprise that was the beginning of my journey with muscular dystrophy, I couldn't hold a pencil to write my name and this was really getting on my nerves because for me I was okay since I had no fever.

The doctors did not actually tell my parents exactly what I had and a few years later my walking style had changed and I now walked with an unusual waddle. The sports I participated in like soccer, basketball and volley ball were now becoming so difficult for me and by the time I got to High School I had difficulty dressing up and standing up from a sitting position. At the age of 14 years my parents took me again to a physician who referred us to a neurologist where a CK, blood and physical exams was done and that's how I got my diagnosis.

I was diagnosed with limb-girdle muscular dystrophy. My parents were shocked, I was shocked and to make matters worse the  doctor said it was hereditary and no family member living or dead had ever been diagnosed with muscular dystrophy, this condition was foreign to all of us. The doctor told us LGMD like other types of MD had no cure.

LGMD is a rare genetic disorder that is why one can get it even if there is no family history of the condition. Thanks to my parents and siblings life wasn't so rough for me as a teenager growing up with LGMD and even now that I am married I still thank my parents for the opportunities they gave me.

In my Primary School years I got bullied because I had enlarged calf  muscles and my walking earned me a ticket for bullying but I got over it, not for once did I cry for being bullied . The constant stares from people especially when I am being help to stand in public places sometimes used to make me feel like an alien but that too passed.

I graduated from college, with a Diploma in Legal studies. I run a family business with my husband and I am also the founder of MUSCULAR DYSTROPHY AWARENESS OF KENYA which is also doing well in creating awareness about MD and other related disabilities here in Kenya. It  was founded in the year 2009. I wanted to connect with people with the same condition as me.

It wasn't easy starting up cause first I had to learn about MD and through the internet I got what I was looking for first information and second to connect with people with the same condition. I have learned a lot from the My Becker Story blog, MDA, the speak foundation and the Muscular Dystrophy Campaign. In Kenya a few years back when I was diagnosed no one knew about muscular dystrophy apart from the individuals who had been diagnosed with MD. It took me 15 years to meet people with MD in Kenya thanks to the Organization I founded.

With LGMD you can live a life that you've always wanted, what you need is faith, believe you can and go do what you really love your disability notwithstanding. Our Government has also stepped up and is also giving  people with disabilities more opportunities than ever before to develop and use their abilities i.e in employment placement and education for all.
With the research going on around the world, I do believe in hope and with the breakthrough we saw in some form of Duchenne there is indeed light beyond the tunnel.

We are all in this together and a cure is coming soon...
Last but not least I would like to thank Brad Miller for the work that he does in educating us all about BMD. I feel humbled to know you. God bless you abundantly.

We encourage you to visit Eva's blog page at aboutmusculardystrophy.blogspot.com


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3 comments:

  1. i have seen your journey and you are a very strong woman... love you ssooo much

    ReplyDelete
  2. Thanks Foster.
    I changed the name of my blogspot to achochsjourney.blogspot.com

    ReplyDelete
  3. Thanks Foster.
    I changed the name of my blogspot to achochsjourney.blogspot.com

    ReplyDelete