EB Connect Spotlight: Mehmet Kacmaz

Our one-of-a-kind EB Connect community is made up of individuals and families from around the world who are navigating life with EB. The EB Connect Spotlight series highlights these individuals and their unique stories.  

Today’s spotlight shines on Mehmet Kacmaz, a 25-year-old travel enthusiast and EB advocate who lives with Dystrophic EB. He resides in a small village within Diyarbakir, Turkey. 

1. When were you diagnosed with EB? Please tell us about you/your family’s journey learning about the diagnosis. 

I’m not sure of my EB type, probably Dystrophic. My uncle and aunt had four children with EB. All of them unfortunately passed away. I also had a brother older than me who passed away from EB at 50 days. I have 2 sisters and 2 brothers who don’t have EB.  

My village is small, about 300-400 people. Our village people are a little disconnected from the world so my family and I didn’t know anything about EB. Doctors here don’t know anything about EB.  

Until 2014, we didn’t have internet connection. With my smartphone, I learned many things. It was very useful although the internet was very slow. Although the phone is broken now, I’ve kept it on my shelf because everything started with that phone. With that phone, I bought books and connected with people like me.  

Just 4 years ago, we discovered the disease name Epidermolysis Bullosa (EB). I spent 5 months researching EB.  

I thought it was just me like this in this world, but I met a lot of people with EB in my city and in my country and other countries. I’m now trying to spread more awareness.  

2. Please tell us about growing up with EB.

When I was a kid, I was unable to go to school like my friends. I knew I was different, and my skin was very sensitive, but I was happy. But when I turned 18, all my friends disappeared to go to university in other cities and I was lonely. Now I am 25 and I still only have a few friends.   

When we were kids, we played together but when we grow up, when they go for a picnic or fishing and play football or other events, they don’t invite me. I don’t want to admit it, but it’s probably because of my disease. That’s why I’m trying to focus on other things. I need to be patient. I believe that we can see a cure for us; I just ask doctors and scientists for a more comfortable life.  

3. What are some challenges that you’ve faced and how were you able to overcome them?  

My hands were almost closed, so I contacted a local news channel about my disease with the hope that there is help for me. A journalist came to my home, and they recorded a few videos and took photos and I told them about my disease.  

From that experience, I met a woman whose son is like me. She has a small foundation in eastern Turkey and she’s getting together people like me for support such as medicines, bandages, and cream. She told me then that my hand situation is very bad and that soon I won’t be able to hold my phone or a spoon and that I will have to rely on my mother and father. She told me that should I have a surgery. So, I did three years ago for my right hand. My surgery process was so painful especially when they wrapped my surgery injuries. I had tough times, but I’m now recovered and better. Thanks to the surgery, I am more comfortable.  

Our foundation manager told me that I was in the lucky group. We lost many butterfly disease people and children. I lost my two closest friends. That’s why three years ago, I decided to learn English to better explain my disease to doctors.   

My life was my village. I was not able to travel. But after my hand surgery, I discovered many things. I read many books and travelled to the big cities of Turkey and introduced my disease to many people.

4. What do you love most about travelling? 

I love to travel. Before the coronavirus, I could go anywhere because I was starting to feel brave.  I visited Istanbul alone. My cousins were surprised. But I knew that people would help me get by like my uncles in Istanbul and family members in other cities.  

The first time at the airport, I was looking around at people coming and going and I felt perfect. I was just reading my book and listening to my music.   

I knew then that if I can travel, I can forget my disease, I can improve myself and I hope to be successful in spreading awareness.  

5. Please share with us your dreams and aspirations.

My goal is to inspire all people living with EB. I want to tell our story to help people. I hope that one day I can travel the world to tell people about EB. I don’t want to spend my life in this village.  

I also hope to make a YouTube channel in the future.  

When I was a kid, I couldn’t go to school, but I learned Turkish at home. And my Turkish is better than Turkish people! Now I’m learning English. Maybe next year, I will start German.  

6. What activities bring you joy? 

I love to read books about science. I love watching technology videos. I love going fishing and with my friends, I love to talk about philosophy. I love watching Netflix and HBO series, especially West World.  

I really love to be alone at home. When my family goes to the field to tend to the vegetables that we grow in the summer, I really love cooking. My recipes are good!   

When I’m cooking, I feel really good. I feel like I can do anything and that I’m enough in this life.  

7. What message would you like to share with others impacted by EB? 

Our life is painful, but hope exists in our life too. Maybe we are spending a lot of time bandaging our wounds but when we are just having a cup of tea, we are perfect.   

If they can, they should travel. This is very important; they should see the lakes, go fishing, and many other things. And if they can, they should watch documentaries about other countries and go abroad and discover different cultures. This is very good for our wellbeing. If we stay at home all the time, everything is narrowed. Everything looks like “Epidermolysis Bullosa”. That’s why we need to go outside and travel and meet different people and different cultures. We should do things that make us happy.   

Thank you, Mehmet, for sharing your story! You can connect with Mehmet by sending him a message on his profile here.

If you would like to contribute to the EB Connect Spotlight series, please send a private message to Aigerim!