Stricken mum has glass tubes inserted into eyes in battle against rare condition

A mum has bravely opened up about her struggle with a rare condition that's ravaging her organs and has led to her having glass tubes inserted into her eyes. Amanda Kenvyn has been grappling with granulomatosis with polyangiitis (GPA) since she was pregnant three years ago.

The 33-year-old's symptoms were initially dismissed as normal post-birth effects but after continuing to struggle, she was eventually diagnosed with GPA. The disorder causes inflammation of the blood vessels in the nose, sinuses, lungs, throat, and kidneys.

As part of her treatment, Amanda has glass tubes inserted in both eyes to try and prevent infections. On top of that, she faces the reality of undergoing surgical procedures to widen her narrow windpipe every six months; a process she "hates" but accepts due to the lack of alternatives, The Mirror reports.

Speaking about her ordeal, Amanda said: "I've had to have Lester Jones glass tubes inserted into both of my eyes to try and stop infections. My windpipe is more narrow and I'm having to have surgery every six months to re-open it.

"I know when I need it, because I get really breathless and I can't sing a song and I get really breathless. I hate it but there's nothing else that can be done for me."

The onset of her troubles, which included headaches, joint pain, and an alarming abscess, started during her pregnancy with her son Toby, who is now two. After giving birth, the headaches and sinus pain persisted and she was unable to lift her baby from his cot due to a loss of sensation in her hands.

The admin assistant said: "I kept going back to the doctors and they kept saying it was postpartum and that it would go away. I was going back every week because strange things kept happening - I had sinus pain and headaches and I couldn't lift my baby up out of his cot.

"I lost the sensation in my legs a couple of times, so my husband had to rush me to hospital. I had a lovely doctor who said she didn't know what was wrong with me and asked if she could reach out to other people.

"My bloods were coming back normal apart from my infection markers. Then one day my friend told me to look at my nose and it had completely collapsed - so I went back to the doctors and she told me it could be this disease."

In the UK, GPA is extremely rare, with it estimated to affect only about one in 100,000 people. Speaking about her diagnosis, Amanda said: "I was totally confused. The first thought I had was 'why me and what have I done to deserve this? ' because I thought I was going to die.

"I had lots of questions and I did a lot of Googling - but it's taken a lot of strain on my mental health and I'm not the person I was before. I used to be a fun, bubbly and outgoing person and now I'm finding it so hard to come to terms with it. I'm worried that it will attack me even more and I'll die - because what would happen to my son?"

Amanda has undergone immunotherapy treatment and may require an intensive three-month chemotherapy course in the future to prevent the condition from further attacking her face. She is heartbroken as she feels her "physical appearance has changed so much" and believes she now has a "new face".

Amanda, from Scunthorpe in Lincolnshire, said: "I've had to go from full time hours to part time hours and I suffer from extreme fatigue so I'm in bed for 8pm every night. I've even had to move into a bungalow because I can't go up the stairs because I get so out of breath - that was a nightmare in itself because I loved my house.

"I suffer with nosebleeds daily because the disease is attacking my sinuses and my face - if I cough or laugh too hard then it starts bleeding. My physical appearance has changed so much, I've never been thin but from the chemotherapy and steroids, I've got a new face and my nose looks strange.

"The immunotherapy takes time to build up and I've been told it's working because the condition is only attacking my face. I'll be having another round and then if that doesn't help, then I may need three months of intense chemotherapy that cancer patients have."

Amanda's husband Gareth, 36, has launched a Gofundme page to support his wife during her fight against the illness. Amanda credits her family as her motivation to persevere, adding: "My husband and my son have been amazing and have always been there for me at my lowest."

She continued: "I've had some thoughts about not being here and he's managed to talk me around and save me. I just have to look at my son and I think I need to be here for him - he's my purpose for carrying on."

Supporters can contribute to Amanda's treatment fund through the fundraising page.

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