Boy Suffers From Rare Condition That Leaves Body Covered In Painful Blisters
One young boy suffers from a very rare condition which leaves his body covered in painful blisters.
Geraint Burns, of Neath, South Wales, has such sensitive skin that it breaks out in agonizing blisters if he gets too hot or gets rubbed or knocked.
The 18-month-old’s skin is so red and sore that strangers will ask if he has been burnt, forcing his mother, Angharard to give out leaflets explaining his ailment, the New York Daily News reports.
Angharard Burns, 27, said: "It's frightening how many people just assume his skin is a result of something I have done wrong.
"I've even made cards that I hand out to people who stare at us in the street to educate them about the condition.
"Geraint reacts really badly to changes in temperatures so I have to be extremely careful when we go out.
"I have to leave his top off sometimes in supermarkets when we go shopping so his body doesn't over heat.
"People always stare at his skin and I've overheard women before whispering about how cold it is and how cruel I must be to not make him wear a t-shirt."
(photo via NY Daily News)
Geraint was born with diffuse cutaneous mastocytosis – a condition where the skin is thickened and very easily blistered. Only one in 500,000 people around the world suffer from it.
People often stare and believe Geraint has been sunburned, and accuse his mom of not thoroughly caring for him.
Angharad said: "When Geraint was born his tiny body was covered in blisters and a rash.
"The doctors thought he might have had an infection so he was taken straight to the ICU.
"I was completely overwhelmed and in a state of shock - my pregnancy was great and I'd had a reasonably easy labor so why was my baby's skin so sore?
"I started blaming myself - I was sick with worry. I was advised not to eat peanut butter throughout my pregnancy but I had and I kept thinking it could be the cause.
"The dermatologist came to have a look at him and thought it might be mastocytosis so he did a skin biopsy.
"When doctors confirmed it was diffuse cutaneous mastocytosis I was devastated - the whole process was a complete blur, I'd never heard of anything like it.
"I was so frightened all I wanted to do was give my baby a cuddle but it would be too painful for his fragile skin.
"I have to be really careful when I hold him because his skin blisters so easily.
"Even breastfeeding was a struggle, it would make his body over heat and he would itch constantly.
"Now, Geraint will scream for hours but I just have to sit with him and wait until he calms down - I can't pick him up like other mothers would because it only makes him worse."
The condition can even lead to anaphylactic shock – a severe and likely life threatening reaction.
The rare condition is induced by the accumulation of mast cells in the skin. Mast cells contain substances such as histamine that control allergic reactions, according to the Genetic and Rare Disease Information Centre.
Geraint has a bad reaction to most fruits and vegetables that have high range of histamine, like strawberries and tomatoes.
Angharad said: "Geraint has to take his medication at least four times a day otherwise he can become extremely poorly.
"As Geraint was born with the condition he is one of the lucky ones and will hopefully grow out of it by the time he's seven or eight.
"My dream is to be able to take him on a sunny holiday somewhere and for him to enjoy the heat like any other child.
"I've been fundraising for the UK Mastocytosis Support Group with an aim is to raise awareness and to raise money to fund research."
Irene Wilson, team leader at the United Kingdom Mastocytosis Support Group said: "With Mastocytosis the body produces too many mast cells. Mast cells are found throughout the body in health and have beneficial effects on wound healing and immunity.
"They can also cause disease by becoming involved in allergic reactions.
"A child's symptoms vary from child to child and can include itching, flushing, hives, abdominal pain, diarrhea, nausea, vomiting, GI hemorrhage, bone pain, headache and irritability.
"Many doctors have never seen a case of mastocytosis, and even some specialists might not recognize the condition."
While there is currently no known cure for mastocytosis, there are treatments for the symptoms of the disease. No one treatment is successful in all children.
The cause is unknown and familial situations are uncommon.