A woman who lost her nose to a rare autoimmune disease says she is determined to stop it from happening to others.
Jayne Hardman has been living with a prosthetic nose for years after it caused catastrophic damage to her face.
The 56-year-old’s nose wasted away after her dog, CeCe, headbutted her, causing her nose to become swollen and constantly blocked.
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It took two years for her to be diagnosed with vasculitis, a group of conditions that cause inflammation of the blood vessels.
She was put on chemotherapy tablets but, eventually, her nose completely collapsed, leaving her relying on prosthetics.
“Losing a nose is extremely rare,” Jayne, a sales representative from Redditch, Worcestershire, told Need To Know.
“I feel proud of the way I’ve dealt with it.
“I’m still on medication and likely will be forever, but the future is incredible bright.
“I wasn’t told what my life expectancy was, but googling it initially and it wasn’t good.
“So now I’m in remission and doing well.
“I now have a normal life expectancy, which is priceless.”
Jayne’s ordeal dates back to 2012, when she collided with CeCe.
She sought help for a bleeding and swollen nose, but doctors were baffled as to the issue, with her nose beginning to “collapse into her face”.
Eventually, a specialist tested her blood for an autoimmune disease and she was diagnosed with Anca Positive Vasculitis – a group of diseases characterised by blood vessel inflammation (vasculitis).
The condition occurs when the immune system attacks healthy blood vessels, causing them to become swollen and narrow.
According to the NHS, this may be triggered by an infection, another underlying condition, or a medicine, although often the cause is unknown.
Jayne started chemotherapy to manage the effects and is able to smell and taste again.
She said: “I’m proud to wear my nose.
“I do in the winter try to keep warmer as it sometimes does drip if it’s very cold which actually always makes me smile.
“Putting on polo necks or tight fitting clothes usually flips it off which never ceases to make me laugh.
“My nose is part of me now, just as much as anyone else’s.”
Since then, she has been fitted with a prosthetic and even appeared on This Morning to share her story – determined to raise awareness for the little-known condition.
Jayne says her experience, and the attention it has garnered, has helped shape changes in the way vasculitis is managed, with treatment guidelines evolving to help prevent others from suffering the same life-changing complications.
She believes she is the only person known to have lost their nose to vasculitis.
Jayne, who raises awareness for Vasculitis UK, said: “I genuinely think my dog saved my life.
“Dogs can smell Parkinson’s and cancer and I think she could smell it.”
One unexpected improvement in Jayne’s life came after having grommets fitted, which completely resolved the hearing problems that had previously required her to wear hearing aids.
However, she continues to experience problems with her left eye, where the disease first caused damage.
After undergoing three operations, she has been left with chronic dry eye.
Doctors have offered Botox injections to help improve the condition, but the treatment carries the risk of leaving her with double vision.
And every six months she receives chemotherapy to keep the disease in remission.
Jayne said: “I’m still on medication and likely to be forever.
“Some people do get to medication free remission but that’s unlikely for me.
“I am passionate about raising awareness as most GPs will not see a case of vasculitis and had I been given a blood test at my first ever appointment, I would possibly still have a nose.”
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