Mother Raises Awareness for SJS in Remembrance of her Daughter

A woman had the misfortune of losing her daughter to a rare disease caused by a reaction to medication. Now, she’s speaking out to raise awareness for this debilitating condition.

Her name is Helen Collins and her 33-year-old daughter Elaine passed away back on October 2015 after she was treated for a kidney condition. Elaine had been diagnosed with a very severe case of Stevens-Johnson syndrome (SJS).

Stevens-Johnson syndrome is a highly rare skin disorder that targets the mucous membranes and results in painful blistering and peeling. The blistering forms inside the body and makes it difficult to eat, swallow, or even pee. To learn more about SJS, click here.

In Elaine’s case, the disease came about due to a particular medication, Ramapril. Her case of SJS is called toxic epidermal necrolysis, one of the most severe forms of the disease.

Because the disease is so rare, Helen knew she had to raise awareness, especially considering that her daughter had a very long and painful death because of it. She is rigorously trying to make the disease known to the public.

Helen remembers her loving daughter and how loving she was to her own children. Elaine’s coroner, Joe McCrisken, hopes that this case will raise awareness and educate people about the condition.

Elaine’s organs have been donated to medical research in hopes that others with SJS could one day find relief.

Dr Joe McEvoy spoke to Radio Foyle about SJS and how rare it is– the chances of developing the disease are only about one or two in a million.

“It starts as a skin condition, which is mild, maybe chills, fever or slight temperature, then it becomes more serious and you get pain in the skin itself and blistering, most commonly around the mouth.”

Helen will continue, with the best of her ability, to raise awareness for SJS so that her daughter’s death doesn’t go in vain.

Read more about this story on BBC.

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