Skip to main content

Please Read and Support Justin Hamilton~CEP


Embed
A young man in south western Nebraska is battling extremely rare skin condition.

Ever since he was born, Justin Hamilton has had an extremely rare disease that makes him allergic to sun light,

As Nebraskans, we all enjoy the outdoors, and we all take precautions to protect ourselves from the sunlight, whether it is a hat, sunblock, or long sleeve shirts. Justin Hamilton is no exception, but he has to take it to a whole new level.

"You know, I'm 28 years old and a lot of people think I've been in a burn or something with the scarring on my face and my hands, but it's really sunburn. There's something my body that doesn't make to prevent the UV rays from, you know, blister and whatnot,” says Justin Hamilton , Living With Rare Skin Condition.

Justin was born with an extremely rare skin condition called Congenital Erythropoietic Porphyria.
The symptoms are extreme photo sensitivity to sun light that leads to blistering, severe scarring, as well loss of facial features.

"There's very few people out there with this kind of condition and so it's really rare. So there aren't a whole lot of studies to fall back on,” says Hamilton.

There are possible therapies for Justin's conditions, including bone marrow transplants, blood transfusions and even gene therapy and stem cell transplantation.

"We've got in contact with some doctors down in Texas that could really help us out. You know, there's a lot more research now and technology that, I Guess and hope ... We're not trying to get too excited, Maybe there's a procedure or surgery that they can do to get rid of whatever is my body doesn't make,” says Hamilton.

Despite his condition, Justin lives a full life. He's a lover of animals and the outdoors and was recently married in 2011

"My wife is just amazing. She helped me out through thick and thin. I couldn't ask for a better wife,” says Justin Hamilton , Living With Rare Skin Condition.

Justin Hamilton is one in 1,000,000, literally.
Not only for his condition, but also for his attitude, outlook on life, and his great sense of humor.

"There have been times when I'm down but I have a great loving wife and family and friends that have always stood there behind me. I've always tried to give more than take and in return you get back what you give into it I guess you could say,” says Hamilton.

There will be a fundraiser Sunday October 28th to help Justin Hamilton to raise money for medical expenses.

It's in Hayes Center at the 4H building starting at 5 p.m. with a meal.

And a Live Auction at 6:30.


For a Detailed list of medical information on this Rare Disease CEP- Porphyria please visit www.porphyriafoundation.com you can also make a donation to support Research Dr. Education & the APF.  Show your support for them both, learn how today.

Comments

Popular posts from this blog

Amazing patient advocacy....and needed media for this issue. Thank you Terri Witter!

Q & A WITH PORPHYRIA EXPERT, DR. BRUCE WANG, UCSF

Q & A WITH PORPHYRIA EXPERT, DR. BRUCE WANG, UCSF 
The APF asked our Facebook friends for their top questions they would ask a porphyria expert.
 The following questions were submitted to Dr. Wang for his responses ... Q. Does EPP give us bad teeth? Also, do people with EPP get stomach pains or is that with the other porphyias? A. The porphyrin that accumulates in EPP patients is protoporphyrin IX, which does not cause discoloration to teeth or abdominal pain.
 The type of porphyria that leads to discolored teeth is Congenital Erythropoietic Protoporphyria. The porphyrias that lead to episodic abdominal pain attacks are the acute hepatic porphyrias. Q. I have EPP and I have a severe reaction on my hands and lips. Do I seek urgent care? Also, what can you even do when you burn your lips? A. The acute reactions to sunlight in EPP can be very severe and, unfortunately, there are not many effective options to treat the symptoms. Nonsteroidal anti-inflammatory drugs (NSAIDS such as ibup…