By Aimee Braniff Cree
THIS TWIN has revealed how the skin on her face painfully bruises from within after she developed a seemingly innocuous pimple on her lip at the age of thirteen – leaving NHS medics totally baffled and her alarming condition remains UNTREATABLE.
Student and social media influencer Nancy Morel (18) from Milton Keynes, Buckinghamshire grew up with her eight siblings who she was very close to. Nancy has a twin sister, Tilly who does not share her mystery skin condition.
Nancy started experiencing symptoms at 13 when she was in school and they initially thought it was a reaction to ibuprofen but it wasn’t an allergic reaction.
She has spent the last five years visiting hospitals and doctors and been misdiagnosed with urticarial vasculitis, received multiple skin biopsies, been put on steroid injections but all to no avail her condition has got no better.
Nancy is no longer attending hospital as she feels like they weren’t able to help her and is now concerned that the condition may just be something she has to live with.
Up until her first flare-up at 13, Nancy had no underlying health conditions and had never had any skin complaints aside from the occasional pimple that plagues all teenagers.
“When I was thirteen all of my skin problems started, but before that I had no prior health conditions so it was a real shock,” said Nancy.
“I also have a twin sister and she has never experienced it, she has no skin conditions.
“I was in school and my lip started swelling up out of nowhere, it was completely random and the school nurse said it meant I was allergic to ibuprofen.
“They thought I had taken ibuprofen in school which I hadn’t but they did not believe me because of the reaction.
“They took me to the hospital and they told me it wasn’t an allergic reaction, they told me to just go home and monitor it, the swelling stayed and this bruise appeared on my lip for a few days.
“After that initial reaction it spread to my legs, my feet, my stomach, my face and now it is just all over me quite a lot of the time.”
Nancy is able to preempt the flare ups before they start she begins feeling nauseous and light headed and the pain in her face starts building but unfortunately there is very little she can do to stop them or to help manage the pain.
“I can tell when it is going to happen probably a few hours before, mainly because I start feeling really sick and light headed,” said Nancy.
“It is almost an instinct I have now I know when it is going to come up.
“It is really really painful, especially on the different parts of my skin, my face is probably the most painful.
“The best way I can describe the pain is when you are at the end of having pins and needles and you get that sharp stabbing pain coupled with a throbbing bruising pain at the same time.
“There isn’t much I can do when it flares up, nothing really works, I take paracetamol just to take the edge off the pain but it doesn’t work very effectively.
“I will also put ice packs on it sometimes if the burning is really bad but it doesn’t make the bruising go away so it is a nice sensation in the moment but it doesn’t make the actual symptoms any better.”
When Nancy‘s symptoms first appeared doctors did try to give her answers but it ended up being a misdiagnosis and putting Nancy back at square one.
“I had a lot of tests and three skin biopsies , they couldn’t pin it down to one thing specifically, they told me they were pretty sure it was a skin condition called urticarial vasculitis,” said Nancy.
Urticarial vasculitis is a rare form of vasculitis characterized by inflammation of the small blood vessels and low levels of complement proteins in the blood. Urticarial vasculitis causes recurrent episodes of hives and painful skin lesions that itch or burn.
Unfortunately following years of treatment the doctors retracted this diagnosis and Nancy was in the dark once again.
“For three years I was going to the hospital under the guise of having that diagnosis but then after they had been treating me for three years and kept testing my skin it wasn’t behaving like urticarial vasculitis,” said Nancy
“It didn’t look like how that skin condition looks so then they undiagnosed me with that and I stopped going to the hospital at that point.
“I had spent the last three years going to the hospital three or four times a week, they had put me on steroid injections all for them to turn round and tell me that wasn’t what I had.
“It was extremely deflating, I was 16 at the time and they basically told me there was nothing they could do to investigate it more until I was 18.
“I am 18 now, but I don’t want to go down the hospital route again because it was all just too much on me emotionally.
“I have seen a few doctors here and there since I was 16 and still none of them have any idea what it is so I want to know more about it myself. I don’t want to go back to having my life filled with hospital appointments.
“I would rather just deal with it on my own.”
Nancy feels very lucky to have the support system she does and she is amazed by the positive reaction she has received both online and in public about her mystery condition.
“People are genuinely very kind about it, I don’t think I have had any bad experiences that have left me shocked,” said Nancy.
“Considering I am a teenage girl who has this unusual skin condition I think it is a really good sign that people are so kind about it.
“Everyone is always willing to learn about it and find out more.
“I would say once a day I someone will message me on Instagram saying ‘I think you have got this’ or ‘I have had similar experiences can you help me, can you help my daughter.’
“It is really nice to read their stories and see people like me, occasionally people have a diagnosis and they speak to me. It is lovely that they want to help and it is usually strangers.”
Nancy has learned to love what makes her unique and she has this message for anyone who may be struggling.
“It is really hard to feel confident being who you are but since I have grown up with it i have learnt that it can actually make you more confident,” said Nancy.
“Sometimes someone might look at you when you are walking down the street but try not to think of it as them looking at you in a bad light, they are looking at you because you look different, you look unique.
“It is a really amazing thing to look unique, if you have something that isn’t what a lot of people your age have, or even just something not a lot of people have, take it as a positive and work around it in a positive way.
“People have told me that they think my skin makes me look really beautiful and it makes them feel special being able to see it.”