According to the British publication The Sun — a woman’s rare disease diagnosis slowly saw her nose collapse – and her nostrils close completely.
Following a seizure, Savannah-Kelly Simmonds was diagnosed with Granulomatosis with polyangiitis (GPA) in 2016, and shared with The Sun the harrowing experience she suffered on the road to understanding her rare diagnosis.
What is GPA?
Granulomatosis with polyangiitis (formerly known as Wegener’s granulomatosis), is a rare blood vessel disease characterized by the abnormal inflammation of the small and medium-sized blood vessels throughout the body, which does not allow blood to flow properly and prevents cells from getting the oxygen that they need.
Most commonly, GPA affects the sinuses, lungs, and kidneys, but can also affect the eyes, ears, skin, nerves, and joints. Symptoms of GPA can develop over days to months, usually beginning in the respiratory tract.
These early symptoms include:
- Nasal congestion
- Frequent nosebleeds
- Shortness of breath
- Bloody cough
Savannah was left in constant nasal pain after hitting the bridge of her nose on her radiator while suffering an epileptic episode in 2015. And it only got worse, until it hit a fever-pitch.
“I was incredibly bunged up but wasn’t able to blow my nose without being in excruciating pain,” explained Savannah-Kelly. “As time went on I realised that the reason I was so ‘bunged up’ was because my nasal cavities were closing and my entire nose was collapsing in on itself.
Although she has had more than four years of surgeries, chemotherapy, and different treatments — she claims that nothing has worked thus far.
“I’m now doing everything I can to look for options to move forward as I cannot let this disease control me any longer, whether that’s getting a prosthetic to replace my flattened nose or having it amputated altogether.”
The mother-of-three is reaching out for answers and possible cures to get her nose and her life back.
“I hope that by sharing my story I’ll be able to get some answers and recommendations,” she said, adding — “But mainly, I want to raise awareness for this horrible disease that has taken away my life and my nose.”
Thank you, Savannah, for sharing your story so publicly. We hope you find effective treatment soon.