Dawn
Systemic vasculitis affected Dawn’s ears, nose and eyes. She needed a major operation to repair her collapsed nose. Dawn is keen that doctors and nurses have support and training to recognise vasculitis so it can be treated before further damage is done.
Dawn worked for 17 years as a learning support assistant in a mainstream primary school. She left two years ago to care for her parents. Dawn lives with her father, husband and three grown-up children. Ethnic background: White English.
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Dawn’s vasculitis has been in remission without medication for two years, but she lives with the effects of the disease and its treatments. She welcomes every opportunity to highlight her story in the hope that other people will get a diagnosis and the right treatment before irreversible damage is done.
Dawn’s problem started in 2007 with ear, nose and flu-like symptoms and pain which didn’t get better. This was frustrating as she had previously been healthy. She was treated for allergies but things escalated over the next two years to include headaches, sweats, hearing loss, tinnitus, a changed sense of taste, and fatigue.
By this point Dawn says she looked like she had been punched in the face. At night she would bang her head with the pain and cry in the bathroom so the kids wouldn’t hear.
In 2009 she recalls going to hospital three times in an effort to get adequate pain relief and “demanding” a nose biopsy as the allergy treatments weren’t working. Meantime the bridge of her nose collapsed, changing her appearance even more.
Dawn feels that the appointment where she learnt she had vasculitis was handled with “no bedside manner whatsoever.” She recalls being sent home with more medication and a leaflet. Her vasculitis is now called granulomatosis with polyangiitis (GPA), but at that time was described as ‘limited’ because her kidneys were not affected.
Although devastated, Dawn tried to get on with life and keep a sense of normality. Throughout her illness, Dawn continued working as a learning support assistant and appreciated the support of occupational health with reduced hours and time to attend medical appointments.
As Dawn had lost trust in her local healthcare professionals, members of an online vasculitis support group encouraged her to ask for a referral to a specialist service in another part of the country. From the first visit, Dawn has found the journey worthwhile, as she feels so well looked after. All her appointments are in the same hospital, she can access all test results and letters online, and she can ring at any time. This gives her confidence that she won’t get “lost in the system.”
Dawn continued with different immunosuppressive treatments while the specialist centre went through a lengthy process of getting funding approval from her local health area to use the drug rituximab. After two years in remission she had a five-hour operation to take cartilage from her ear and repair her nose and can now breathe through one nostril.
Looking back, Dawn feels sad that the journey to a diagnosis and effective treatment was so long and tough. For eight of the 17 years she worked as a learning support assistant, there are no photos of her with her colleagues and the children, as she was too embarrassed by her appearance. She feels the counselling she received through her role as a carer has helped her come to terms with the disease and its impact, as has taking part in research and teaching.
Although Dawn had always been healthy, she believes a “stressful life” led to her getting vasculitis.
Although Dawn had always been healthy, she believes a “stressful life” led to her getting vasculitis.
The other thing, and I did - that I didn’t mention - is that I did wonder where this disease come from, how, where did I get it, I’d always been a healthy person. I’d always had a very stressful life, I’ve been, my brother had learning difficulties, and I, he was seven years younger than me and I did effectively really bring him up and deal with a lot of his health and welfare, and two years before I became ill in 2015, we had some very challenging times with him you know, things like he was even taken to court and I had to fight for his rights in court. So, I believe that I had two years of severe stress and that’s what made me ill.
In 2017 I became ill and so did my mother, my mother was diagnosed with dementia, and she had never been ill. So, I do believe that stress is the factor and the trigger because I think my, I think when you’re stressed you have cortisol levels, and if you have too much cortisol in your body, it depletes your immune system, and I do believe that’s what caused all this, my immune system was so low, that that’s where, where I got this from, so.
I try and live as stress free as I can although, you know, life is life.
Before she was diagnosed with vasculitis, Dawn felt that no-one was listening to her.
Before she was diagnosed with vasculitis, Dawn felt that no-one was listening to her.
Well, I was interested when you were earlier, speaking about it and quite often it sounded as if you had to be quite assertive? You know, you said, “It was only after I demanded a certain thing,” you know, whether it was a biopsy or a second opinion.
Yeah, yeah. Well, I knew nobody was listening to me, and I knew I, I was deteriorating. Yeah, if I hadn’t demanded this biopsy - although my nose had collapsed by then so maybe they would’ve eventually have come to a diagnosis. Because it is a process of elimination, isn’t it, with all these diseases and they have to get, do these first before they make that decision.
So, it’s very hard. You know I was annoyed with my doctors, furious with my doctors, that they’d misdiagnosed me for two years. And it was only that I asked to be put through to the ENT department as well. You know, after two years of being ill. So yeah, I had to demand everything all the way through really.
And I think, you know, when you go now you have to take notes and you have to research what it is, you know, I think you’ve got to be pretty clued up now, but I think that’s the same for anyone now when they go for a hospital appointment, that they know what they want to say and what they want to ask and go for a second opinion if you’re not happy with that.
I find it very hard to trust doctors now, which is why I acted so quickly when my daughter started to develop ENT symptoms. And I find it very hard to let my kids go to doctors appointments on their own. “Did you ask this? Did you ask that?” you know [laughs]. Very hard.
Dawn thinks she shouldn’t have been told so bluntly about vasculitis and its implications.
Dawn thinks she shouldn’t have been told so bluntly about vasculitis and its implications.
Then my next ENT appointment arrived with ENT at [name of local large university hospital] and they said that the results of my biopsy had come through and the nas-, because my nose bridge had collapsed, they said it confirmed the diagnosis of limited vasculitis. It was very devastating because I’d never heard of it before. I was told quite bluntly that I’d be on steroids for the rest of my life and possibly on a kidney machine. No apology was given, for misdiagnosis over the past two years.
I was sent straightaway to see the rheumatologist within that hospital. He gave me a thorough, body search, he was looking for rashes, looking at my feet, looking for different things for I suppose the vasculitis, but he also confirmed it was, it was limited, vasculitis and put me on 40 milligrams of steroids, and I was put on a drug called mycophenolate, cetirizine, diclofenac, co-codamol, Calcichew, alendronic acid, so I came out with quite a load of tablets and a shock diagnosis and a leaflet and sent home.
I was absolutely devastated. I had no-one with me at the appointment, and just come home absolutely traumatised because I had no knowledge of what this disease was about but was told it was a pretty, very rare disease. So yeah, that’s how my journey started.
Rituximab finally brought Dawn’s vasculitis into remission. She has been off medication for two years.
Rituximab finally brought Dawn’s vasculitis into remission. She has been off medication for two years.
I tried this, various other drugs, they were mycophenolate, cyclophosphamide, methotrexate, so I had been through a lot of them which none of them were working and by then my disease was still causing destruction and damaging cartilage around my body. I had scleritis in the back of my eyes, posterior scleritis. I had, by then I had 40 per cent hearing, tinnitus, saddle nose deformity, achy bones, joints, I had been having a lot of scans.
During July I became unwell and was admitted into [the tertiary referral hospital] with sepsis, I was allergic to azathioprine, which was the latest drug that I was on, so they took me off of that and put me on the next one.
[The tertiary referral hospital] was eventually given permission to administer rituximab in 2011, so for two years they were fighting for me to go on this drug, and during this time the damage was continuing. I was finally given rituximab in 2011 to 2013, which did bring my disease into remission.
But they don’t know how long I will be in remission. Rituximab is a new, is a new drug. They don’t know. Obviously, it affects people differently; some people have to have further treatments. But yes, it’s now, what 2013, is, was my last infusion, so that’s seven years, and off the drugs for two, so it’s obviously the right, doing well for me.
Dawn’s surgeon did “an amazing job” repairing her nose after it was damaged by vasculitis. At first, she was “terrified” to blow it.
Dawn’s surgeon did “an amazing job” repairing her nose after it was damaged by vasculitis. At first, she was “terrified” to blow it.
There are a few people that I’ve spoken to that have saddle nose deformity like mine, and there’s one very famous lady who has, she has a nose prosthesis is it? Where she actually takes her nose off. It damaged literally took away the whole nose, she just puts her nose on and takes it off.
But I’ve never seen anyone face to face who’s had saddle nose deformity like mine. My nose is now beginning to collapse again, and that’s not due to disease activity that’s just, you know, it just will, they can’t hold it there forever, it will collapse but obviously they won’t do any work on the nose until it’s absolutely necessary. They can only do so much; they can’t keep on repairing it.
But sometimes, like yesterday I looked in a photo and I said to my husband, “My nose is collapsing again,” and he said, “Yeah,” he said, “It’s going back.” It depends on how you look at the photos, you know, if I did a side shot [turns side profile] you know, you can, you can see it, but you know, people are so used to seeing my nose as it now. But it was, the operation that took place, you know, the surgeon did an amazing job with the cartilage from my ear to straighten the bridge of my nose and improve the breathing through one of the nostrils.
You said about doing the sinus washouts, that sounds horrible, what does, [laughs] what does it involve?
Oh, it was, oh, gosh it was, so I have as you may know, I have a bottle called NeilMed, I think it is, which I have to pour sachets into, and yeah, I have to hold my nose and inhale it and then flush everything that comes out, so yeah, it’s not very pleasant and can be quite embarrassing, you know, depending on where you are and things and it’s not something that can be done quietly.
But yeah, without it I’d really suffer if I couldn’t clear my nose from the horrible things that it contains, I’d find it hard to breathe and sleep at night. I think people use different things, people use Vaseline and things and salt or, you know, other remedies that they use to decongest their nose. But no, it’s not the most pleasant of things to use.
And I remember when I had my nose done and it was all impacted with, you know, everything and after that I was really, really scared to blow my nose in case I damaged everything that had been done, I was terrified, but they said, “No, it was fine.” Oh, my god, how am I going to blow my nose with this, this work that’s been done? [laughs].
Dawn is a carer. Counselling helped her come to terms with vasculitis and start “looking after myself.”
Dawn is a carer. Counselling helped her come to terms with vasculitis and start “looking after myself.”
Yeah, I got access to the counselling because I’m a carer. I was a carer for my brother and mother, what you call a double carer, so I was attached to [a carers’] support group, and I got very quick access to counselling from there. So, I would see them every few weeks, to talk about and come to terms with it basically, and I had to come to terms that I had to look after myself and look after myself especially with this disease because caring probably, obviously came first in my life and I had to start looking after myself otherwise I wouldn’t be around to help anyone anymore. So, yeah, I had to go through about two years of counselling to come to terms with my disease.
Dawn says it shouldn’t have taken two years of pain and her nose to collapse from undiagnosed vasculitis for doctors to listen to her.
Dawn says it shouldn’t have taken two years of pain and her nose to collapse from undiagnosed vasculitis for doctors to listen to her.
It was frustrating because no-one would listen to me. And I kept saying to them, “This isn’t hay fever, this isn’t, this is something that’s happening with my nose,” and, you know, I’m banging my head with pain every night and crying in my bathroom so my kids can’t hear me. In the nighttime, during the day time when you’re busy you kind of ignore all the pain, but during the night obviously when you’re trying to go to sleep you can’t breathe through your nose, you can only breathe through your mouth and the pain is there and none of the strong painkillers are making any difference.
And I could see my facial, like the symptoms and the face was changing my, you know, I looked like I had been punched in the face, my nose was swelling, and my face was swelling. But I just kept being told time and time again that I had severe sinusitis, which is why I had two sinus flushes.
As I say, and it wasn’t until I demanded the biopsy and my nose collapsed that someone listened to me. Which is why I find it so horrific that this is still going on. Doctors are still missing the basic signs. I know most diseases, you know, you have to go through a system, don’t you, of ruling things out, but I do think that doctors should listen to their patients a lot more, and I think, you know, I’ve got a whole list of the two years of every single appointment that I’d been into the doctor’s. They must’ve got sick and tired of me in the end but, as I say, it didn’t really have to take my nose to collapse until somebody would actually, sometimes it’s just finding someone that has seen, somebody who’s seen it before?
Some people are lucky, you know, a nurse or somebody has recognised the symptoms and got it straightway and of course the earlier you catch the disease the better it, you know, the less damage that is done.