LGMD "INTERVISTA SPOTLIGHT" 

Nome:  İbrahim                                 Età:  55 yrs. old

Paese: Turkey  

Sottotipo LGMD:  LGMD 2B/R2 Dysferlin-related

A che età è stata fatta la diagnosi:

I was diagnosed at the age of 25.

Quali sono stati i primi sintomi:

At first, I was feeling tired in repetitive movements.  The weakness appeared to start in my ankles. It was more in my left foot.

Avete altri familiari affetti da LGMD:

No, there is no one is my family who has this same diagnosis.

Quali sono, secondo lei, le sfide più grandi da affrontare nella convivenza con la LGMD?

There was mild fatigue in the beginning. Because I was a teacher, long periods of standing seemed to negatively affect my work performance. I started to walk with a single cane but had difficulty going to work. I started using chairs.

Since it is a slow progressive type of muscle disease, I had difficulty in explaining myself to those around me.

Qual è il suo più grande risultato:

After quitting teaching profession, I thought I should touch others’ lives. First, I worked for Türkiye Kas Hastalıkları Derneği (Turkey Muscle Disorders Organization – like MDA). Later I also worked for HASGAP (Patient Volunteers Network).  I still work for Izmir-Turkey Muscle Diseases Branch voluntarily.  I have passion for poetry and writing since my secondary school years. I have written two poetry books (Moon Blue Nights and a Shore-Free Sea).

In che modo la LGMD l'ha influenzata nel diventare la persona che è oggi:

Living with LGMD has allowed me to carry the death in my pocket, allowing me to taste more from life. It made it more productive.  It led life to touch more.

Cosa volete che il mondo sappia della LGMD?:

The only way the world knows our world is to make a difference. We cannot talk about changing our quality of life unless we dream, produce and share what we produce. Most of us fight our diseases. If there is no dream and effort in this effort, we cannot change anything. Mentalities that do not dream and produce cannot understand this.

I want them to know that our heart and brain are working.

Se la vostra LGMD potesse essere "curata" domani, quale sarebbe la prima cosa che vorreste fare?:

I would make changes to my imagination. I would run among the galaxies and play in the kids parks of galaxies. To read more “LGMD Spotlight Interviews” or to volunteer to be featured in an upcoming interview, please visit our website at: http://lgmd-info.org/spotlight-interviews