About Vasculitis UK

Sarah's Story

I was diagnosed with Wegener’s Granulomatosis in June 2003, just before my 22nd birthday. I had my tonsils removed in the February and never really recovered from the operation. I became really poorly. I was coughing up blood, had copious nose bleeds, joint pain, had no appetite and lost a lot of weight. A couple of days before being diagnosed I noticed something wrong with my nose - it seemed to have sunk in the middle. I was later told this was called “saddle nose”. At the time I was so ill that it didn’t really hit me what had happened. Within a year of being diagnosed I had to have surgery to fit a tracheotomy and was told at one point that it could be permanent! The tracheotomy stayed in place for a year but, happily, my consultant agreed to remove it just before my wedding in 2006.

photo of Sarah Unfortunately, I wasn’t so lucky with my nose. I was told I could eventually have a reconstruction but that this could not happen until the WG was in remission as, in my case, it was all upper respiratory and sitting in my nose and throat and there was every chance it could collapse again. I found this very hard to deal with. I looked and felt different. My social life suffered as going out and meeting new people was stressful in case they stared at me. I hated having my photo taken, preferring to be the one behind the camera. It didn't matter how many times family and close friends told me “you can hardly notice” or “it looks fine” - to me it was horrible. I couldn’t even put moisturiser or foundation on my face because that meant looking in a mirror. Smiling was particularly hard, it seemed to make my sunken nose even more defined. I used to call myself “Skeletor”!

photo of Sarah Over the next 7-8 years I had numerous relapses. It became a standard joke at my ENT appointments that the first thing I would ask was “When can I have my nose done?” In 2010 he finally agreed to do a reconstruction and said he would take some cartilage from my ear to build up my nose. I don’t know how I felt at this point - excited, thrilled, apprehensive - but mostly scared. What if it didn’t work! Luckily, it did work and, for a time, I did feel a little better. I was slightly happier about my appearance, but I still wasn’t me! I was warned before the operation that it might not last and, unfortunately, after a few months it did start to slowly collapse again. Shortly after this, around the time of my 30th birthday, I started to relapse again.

In 2014 I was feeling well enough and went to see my ENT consultant to discuss other options for me. I asked him about collagen fillers. He said he didn’t do fillers himself but suggested that I go to see a colleague of his who did maxillofacial work. I wasn’t sure what this would entail but agreed to the appointment. I am so glad I did. When I met the consultant he said that he had never treated anyone with WG before and was quite interested/excited in the condition. I explained to him that I wasn’t just there for vanity, that it was affecting my whole life. He totally understood and really put me at ease. He suggested a treatment which would involve injecting Hyaluronic Acid into my nose. He said normally it would involve two sessions close together with follow-ups every six months or so. However, because of my condition, he literally had no idea what the result would be! He therefore said that in my case he would rather build the nose up slowly to see how the fillers would take. He went through the whole procedure with me, explaining the possible downsides - one of which was that it could kill the skin on my nose, more so in my case because I have thin skin.

On the day of the first treatment I was really nervous. Because my nose was so sunken, the procedure involved numerous injections. When I left the clinic he gave me his mobile number, asking me to ring him that night if I had any concerns and also to send him a photo of my nose. It was quite painful to start with and very red and swollen. However, after a couple of days, when the swelling had gone down, I was quite pleased with the result. I was nearly back to me again! When I went for my second appointment we were both impressed by how well it had taken. Since then I have had a couple of “top-ups” and when I went to the clinic in August this year I was told to come back for a review in November.

photo of Sarah I am now very happy with the shape of my nose - I finally have a profile again! The only, small, downside for me is the redness, but this could simply be down to my thin skin. I feel more confident and relaxed and find myself able to smile more. I have been told that this is not a permanent fix and I’ve no idea how long it will last, but at least I still have the option of a full reconstruction at some point in the future if needed. As everyone with WG knows, we are all different and there is no guarantee it will work for everyone, but there are always options out there if we ask.

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Vasculitis Renal and Respiratory Training Day - Hammersmith Hospital

30 Jul 2019

RUDY Study

29 Oct 2015

A study in rare diseases of the bones, joints and blood vessels.

Cortisone (Steroid) Information Website

13 Jan 2014

A new indepth website publishing information about steroids for patients

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