Children with rare skin disease meet in Springs
On Saturday five children with Large Congenital Melonchytic Nevus (LCMN), a rare skin disease, met during an awareness campaign held at B@Home in Daggafontein.
The event was organised by Arms of Angels, a non-profitable organisation, to raise awareness of the disease.
This rare skin disease can be dangerous and LCMN sufferers are more susceptible to melanoma, therefore they are not to be exposed to any UV rays.
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The founder of the organisation, Michélé Brits (35), says when her son Pieter Brits (3) was born she had no knowledge of the disease but has since learned a lot through day to day experiences.
The campaign made her aware that sharing your story and experiences with other parents is soothing.
“We have been in contact with parents from as far as Cape Town and Mpumalanga who all have children with LCMN,” says Michélé.
The organisation is not exactly sure how many LCMN sufferers live in South Africa, but they are currently in touch with eight families.
“Not all the families could attend the event,” says Michélé.
The LCMN appears as a circumscribed, light brown to black patch, covering any size surface area and any part of the body.
“It’s just something you are born with, and Pieter, as well as the other four children, are only one of 500 000 with the disease.
“Doctors can operate, but it will not work as Pieter has too many spots,” she says.
The parents of all these children say their children know they are different to other children, but they all have strong personalities.
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Sieglinde McKeown (36), mother of Alexander (3), says it is quite challenging but they want their son to know that he is still a normal child with normal needs.
This family came from Cape Town to meet other LCMN children.
Faatima Timol (32) says her daughter Husna (4) is proud of the marks on her body.
“She will proudly show right arm to people without hesitation,” she says.
Viola Sadler (38), the mother of Denzel (9) says he is quite comfortable and has a strong personality.
“Our dermatologist has given me the contact details of other parents so that we can share our sad and happy days,” she says.
She agrees that there are challenges but they face them as they occur.
Another parent, Zelma Jooste (34), says they met up with other LCMN parents and decided the awareness campaign is exactly what is needed for her son Jason (11).
The Jooste family lives in Ellisras in Limpopo where high temperatures are another challenge.
All the parents say they use a lot of sunblock as UV rays are another factor they have to consider.
“Our plans to meet other families have materialised and we will keep in touch,” says Zelma.
