A woman with a super-rare medical condition so severe that she has ended up crying blood has opened up about her experiences in a recent interview. Mother-of-one Jo Daniels, who hails from Carmarthenshire in Wales, was diagnosed with Stevens-Johnson syndrome which affects the skin, mucous membrane, genitals and eyes. Jo first realised that she had Stevens-Johnson syndrome in February 2018, after she developed a persistent hacking cough. At first, she wrote it off as just a cold, but soon her condition deteriorated drastically.
She was rushed to Morriston Hospital in Swansea and put through a number of intense blood tests in March. Doctors told Jo that her's was the first case of Stevens-Johnson syndrome they'd ever seen. They believed that the obscure illness had been brought about by an infection which had made her immune system react violently. This had resulted in numerous skin lesions and leprosy-like symptoms. Her eyes and gums began bleeding, and the swollen flesh would sometimes slough off her in bits and pieces.
Commenting on her rare condition Jo stated: "I was convinced I was going to die. The symptoms were horrific and unlike anything I had ever heard of before. It was like having severe burns across the whole of your mouth, nose and eyes and I was in constant pain, unable to eat or drink anything apart from small amounts of water."
"At its worst, parts of my face were starting to fall away and I remember one day finding a big chunk of something in my mouth – which I then realised was a bit of the inside of my cheek that had come away. It was as though I had leprosy. I knew it wasn’t measles ... By that stage, my symptoms were so bad that I was having to swallow clots of blood that were building up in my nose and I was constantly spitting blood. "
She added: "I was barely able to see because my eyes were bleeding. I was terrified ... As the skin started to get drier, big chunks of it began to come off on my lips and in my mouth. It was horrible ... My vision is now very bad because of the sores that were in my eyes. But, more than anything, I feel I have completely lost my confidence and my looks."
"Anyone who hasn’t seen me since before it happened would think to themselves, ‘What’s happened to her?’ because it has transformed the way I look. Now I have bad teeth because it made my gums recede, my eyes are nearly always swollen and I can’t put make-up on, because I can’t see well enough to. I used to be a very sociable person, but I’ve been made an agoraphobic – meaning I don’t want to leave the house – by this terrible illness.”
Thankfully, Jo was placed on a course of drugs, and after several weeks of great pain she managed to pull through. However, she has become less outgoing as a result of her condition and worries that another infection might do similar harm to her. For now though, she's concentrating on living her life to the full and regaining her old exuberance. Good luck, Jo!
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