Amber Peacock

 

              We have recently had the privilage of interviewing Amber Peacock, who has lived with CEP for her entire life. Hopefully, you will gain insight through these commonly asked questions. 

 

What is it like to be a patient of this disease?

 

Life is rough. There are a lot of drawbacks to having Gunther Disease, especially the discrimination that happens.

 

What is a day in your life like?

 

It’s very boring. Because I can’t be exposed to sunlight and fluorescent light, I can’t go outside and I can’t go to work. I end up staying at home a lot, and I have to wrap up completely when I go outside. I have too much iron in my blood so I need medication to take care of that, and I have to exercise my limbs to keep them working normally. I also need blood transfusions every 2 weeks.

 

What would you like experts of this disease to know?

 

I want the experts of Gunther Disease to know that I’m not a lab rat. They try to fill me with drugs, but that adds more problems, and they never listen to me. Instead, they should should focus more on physical therapy and skin healing.  

 

What would you like to learn from the experts?

 

I want to learn something that I have not yet been told. I want something that changes the course of my condition.

 

Any tips you have for other patients?

 

Well that’s a bit difficult because not many people have CEP. I had a friend with CEP, and we supported each other, so a tip would be to find someone else with the condition and to help each other.

 

Where can patients learn more? Resources?

 

Personally, everything that I learned about my condition came from my mother, who was in turn taught about CEP by my doctors.

 

Is there any family history of this disorder? What do you believe is the cause of this disorder?

 

My mother and father share the recessive gene, but I was the first in my family history to have this condition. My first 4 brothers were all born without it.

 

What are common misunderstandings about this disorder?

 

CEP is NOT contagious. It’s a bit frustrating because the people online and the people around me don’t know enough. They think that I’m like vampire and I can spread the disease to them. My friends have asked me whether I would be alright if I didn’t look at the sun. That’s ridiculous, since my skin would still be under the sunlight. I get talked about like a freak or like a myth.   

 

Where can patients find support?

 

Normally, you would assume the answer to be your family. But often, that doesn’t work since your family wouldn’t know what it feels like to have the disease. My family treats me as if I was normal, which doesn’t really work.

 

Do you have any advice for those recently diagnosed?

 

Have a good diet that doesn’t intensify the condition, take a lot of caution in what you do in life, and try to make a protective bubble around you. Also, the people who were diagnosed later in life have got to be extra careful.

 

How quickly were you diagnosed?

 

Here’s a story that will make your jaw drop. I was born 6 weeks early. The doctors induced labour at 30 weeks, and I looked normal, but had a large spleen. So when the doctors screened me, within minutes, I had third degree burns on over 80% of my body.

 

What are some specific treatment methods you would recommend?

Because I have an overabundance of iron in my blood, I need to take supplements to decrease my iron levels. Also, I require blood transfusions every 2 weeks. Just remember to always wrap up when you go outside. I wear a cotton long sleeve shirt, and lightweight pants. There are some companies that actually sell sun-proof clothing. Also, I find that sunscreen doesn’t really help since the problem stems from the inside.

 

Do the lesions and scars from this condition ever fade?

Scars don’t heal. Over time, they just get lighter. The newer marks are still very dark.