How this brave family is braving the pain and raising awareness of a rare skin disease

A RARE skin disease, known as the worst disease you’ve never heard, affects a Sydney family who says it is so painful that even taking a bath is a two to four hour process filled with tears.

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IT IS so rare that it’s known as the worst disease you have not heard of but to the Brown family from The Ponds, it is a very painful one where even taking a bath is a two-four hour process filled with tears.

Their skin blisters very easily — it’s like having a second or third degree burns — with normal things like friction, movements or playing with toys triggering suffering and pain.

Brenden Brown, 39, and his two sons, Jayden, 8, and Jentzen, 6, have been born with the incurable (EB) disease which makes the skin so fragile, its sufferers call it like having butterfly wings.

Jacqui and Brenden Brown with Jayden and Jentzen completing their run.

Mr Brown’s brother Craig also has to live with it but, fortunately, as you get older the skin gets tougher and the symptoms are less severe.

Amazingly, Mr Brown — a pastor with Hillsong Church and chaplain for the Wests Tigers NRL team — and his son Jayden play regular sports and take part in physical activities, with the youngster playing first grade football.

Now Mr Brown and his family are raising awareness and funds for research. His wife Jacqui is free from the genetic disease which comes from his grandmother’s side.

“Six of the 12 children in my grandmother’s family got this disease and this has been passed onto me and my brother and now to my two sons,” Mr Brown said.

“When my sons were born even the doctors didn’t know what was wrong.

“We want to raise awareness about the condition and help with research.

Members of the team: Evelyn Moosa, Hugie De Gouveia, Emma and Ellen Goodhand, Jacqui Brown, Brenden Brown, Rob Gray and Craig Brown.

“At the moment there is no cure and it is very painful.

“Every night we have to use needles to burst the blisters on my sons and it could take up to four hours for a bath.

“Some people have it worse than my kids who are quite resilient and very brave.

“Once you get older, the skin gets stronger but when you are young, it’s very fragile.

“But as a kid, I played Division one representative soccer and Jayden plays in the Football NSW tournaments.

“You play through the pain. Jayden will play his heart out ... afterwards he’s in a lot of pain, but he doesn’t let it limit him.”

Female members of the team: Emma and Ellen Goodhand, Hugie De Gouveia, Jacqui Brown and Evelyn Moosa.

The Browns, accompanied by friends, have raised more than $12,700 for Australasian Blistering Disease Foundation and Debra Australia following their half marathon charity run in the Sri Chinmoy events recently at the Centennial Park.

“We used the name Eternally Brave for our fundraising team, which is a play on the words of the disease EB,” Mr Brown said.

“We have the condition mainly on our hands and feet but you can also get it on your neck, under your arms and face.”

“We use creams and ointments plus bandages to deal with the disease and there is a lot of pain.

“Some people have it so bad that their fingers web up.”

Mr Brown’s life has also changed dramatically for the better since he was in his 20s and running night clubs.

“My life was messed up and after almost overdosing myself (on drugs) I told God I needed help and that’s how I went to Hillsong,” he said.

Epidermolysis Bullosa facts

What: Epidermolysis Bullosa (EB) is a genetic condition of extremely fragile skin which blisters and peels at the slightest touch

How is it caused: A result of a defect in anchoring between the epidermis and dermis, resulting in friction and skin fragility

Affected by: Changes to weather, too much activity, everyday heat, friction and even minor chaffing from the seams in clothing

Any cure? No cure and funding is being raised to help in research

Known as: Worst disease you have never heard of

Sufferers: Numbers around 500 in Australia

Details: http://blisters.org.au