03/31/2015

Name:  Eva    Age: 33 Yrs. Old

Country:  Kenya

LGMD Sub-Type :  Unknown

KAÇ YAŞINDA TEŞHIS KONULDU? 

Bana 14 yaşımda teşhis konuldu.

İLK BELIRTILERINIZ NEYDI?:

I had difficulty running fast and raising my hand up with ease. I was never able also to bend and sweep the floor properly when it came to doing house chores.

LGMD HASTASI OLAN BAŞKA AİLE ÜYELERİNİZ VAR MI?:

No. I am the only one with muscular dystrophy in our family.

LGMD İLE YAŞARKEN KARŞILAŞTIĞINIZ EN BÜYÜK ZORLUKLARIN NELER OLDUĞUNU DÜŞÜNÜYORSUNUZ?:

My muscles are getting weaker by the day and that means my level of dependency is also increasing. It’s hard for me to keep a personal caregiver because most of them do not have the heart, they start complaining just weeks after being employed. I am grateful for the support I get from my husband and relatives who show up to keep my house clean and assist in any way possible.

EN BÜYÜK BAŞARINIZ NEDIR:

Getting married and starting a family with my husband,  Creating awareness about Muscular Dystrophy in Kenya. Many people are now aware of the condition and are glad to have started because I have met more people in the country with the same condition through Muscular Dystrophy Awareness of Kenya and hoping still to do more.

LGMD BUGÜN OLDUĞUNUZ KIŞI OLMANIZDA SIZI NASIL ETKILEDI?

Because of  LGMD I think I have to plan my days in advance, I cannot just wake up in the morning and say, today am going out simply because transport has to be arranged, I must have an escort e.t.c. I am also very optimistic of the future and my life is influenced much with my Christian beliefs.

DÜNYANIN LGMD HAKKINDA NE BİLMESİNİ İSTİYORSUNUZ?

A diagnosis of LGMD  is not a death sentence, you can live your life to the fullest doing what you can at the time. LGMD weakens your muscles but it shouldn’t weaken your spirit. People living with LGMD can work and employers should not shy away from employing us. With the research work going on, plus the trials a cure for muscular dystrophy is in the horizon, I hope it gets here sooner.  

LGMD HASTALIĞINIZ YARIN "TEDAVİ" EDİLEBİLECEK OLSA, YAPMAK İSTEYECEĞİNİZ İLK ŞEY NE OLURDU?
I would kneel down, raise my hands towards heaven and worship my God.