Recently, the Kenyan media highlighted the plight of Abshir Salat, a 10-year-old boy from Wajir who suffers from a rare condition called ichthyosis.
Abshsir who is currently admitted at the Kenyatta National Hospital was flown to Nairobi after Kenyans intervened under the hashtag #SaveWajirKids.
Today we look at some people who have rare conditions whose stories touched the world:
1.Ari Wibowo
Image:The Mirror
18 year old Ari Wibowo form Indonesia has a skin condition called Erythroderma. A rare condition that causes the skin all-over the body to peel off
The skin peeling off in scales or layers happens every 41 days since he was born and due to this, he has been dubbed ‘Snake Boy’
To manage this condition, Ari usually applies moisturizer 3 times a day and soaks in water for at least an hour to prevent his skin from falling off.
The condition has not only caused vision problems but has also caused deformity in his hands
2.Butterfly Boy
Jonathan Pitre is a Canadian boy whose skin can fall off at the slightest touch since he has a severe case of a condition called Epidermolysis Bullosa.
The condition has left him with blisters all over his body and in incredible pain.
Children with Jonathan’s conditions are often compared to Butterflies as their skin is as sensitive as the wings of a butterfly.
Doctors had predicted that Jonathan would live until 20 years as children with a severe case of this condition usually succumb to skin cancer. But there is a ray of hope as a blood and marrow transplant could stop the disease.
Jonathan Pitre is expected to travel to Minnesota to begin the transplant at the University of Minnesota’s Masonic Children’s Hospital; the only hospital in the world that offers this kind of procedure for people with EB.
3.Lizzie Velasquez
An 8 second video calling her ‘The World’s Ugliest ‘woman catapulted her into fame and led to an intense case of cyber bullying. From people asking her to kill herself to other cruel taunts, Lizzie was harassed online because of her appearance due to her medical condition
Lizzie has Neonatal Progeroid Syndrome a rare disease which means she was born without any adipose tissue meaning she has zero body fat.
Thankfully Lizzie has managed to rise above the negativity and bullying and has become a reputable motivational speaker and an author.
4.Adalia Rose
Adalia suffers form a rare genetic condition called Pregoria which causes loss of hair, kidney failure, severe weight loss, stiff joints and premature aging. Other symptoms include a small face with a shallow recessed jaw, and a pinched nose.
Currently Adalia is a You Tube sensation with over 100,000 subscribers.
5.Matthew Hogg
Every time he consumes sugar or carbohydrates Mathew experiences episodes of debilitating drunkenness, tipsiness and severe hangovers.
This is because he has a rare condition called auto-brewery syndrome where his body turns food into alcohol. Basically his body is a walking brewery.
Due to this condition, Mathew has been unable to pursue sports, pursue his course in computer science and he is unable to work.
He currently runs The Environmental Illness Resource, a website dedicated to explaining rare conditions.
