Michael
Our next patient interview in the ‘Your Behçet’s Stories’ series was with Michael. He told us about how he was diagnosed in the 1980s, how his Behçet’s has improved over the years, and his wonderful voluntary job at a local museum. Thank you so much to Michael for sharing your story with us! If you’d like to take part too, you’ll find the details at the bottom of the page.
Michael is 53 and lives in Portsmouth. He is visually impaired which is partially due to his Behçet’s. He is a storekeeper and is currently looking for a new job in retail. Michael was diagnosed with Behçet’s as a teenager and now considers himself to be in remission. He is an enthusiastic volunteer at the Mary Rose Museum in Portsmouth where he is a Gallery Guide.
When and how did you get diagnosed with Behçet’s?
I was just 14 when my first concerning symptoms began to present themselves. I had iritis, crops of erythema nodosum, and thrombophlebitis. I also started to get mouths ulcers. There were not many of these and at the time, I did not know their significance, and neither did my GP or paediatrician who probably dismissed them.
Serious eye problems occurred when I was just 16 years old. I was referred to Moorfields Eye Hospital in 1984 by my then eye consultant in Portsmouth because I had suffered a retinal haemorrhage and months of uveitis. I was seen by two ophthalmic consultants at Moorfields who examined my eyes, and my other symptoms. I was then diagnosed with Behçet’s. I received treatment for my iritis, erythema nodosum, and thrombophlebitis.
Neither I nor my parents, friends or family had heard of Behçet’s before my diagnosis. For many months the diagnosis left me feeling that the only solid ground beneath my feet was the treatment. But the Behçet’s still sent me to and fro from hospital for many medical appointments and additional therapies. Behçet’s ran its course. I missed opportunities that would normally open up in a youngster’s life.
My disease eventually burned out when I was 29 but I’m left with its legacy. I feel very fortunate for it being caught early, responding to treatment, having a supportive father and being referred to two excellent consultants.
You say that you consider yourself to be in remission. What do you think led to this?
My remission came about because of treatment, and being diagnosed early in my teens probably also helped. At that stage my Behçet’s was still getting worse, and this continued for several years before it started to settle down. Remission was a gradual thing it wasn’t overnight. It was slow over several years. By the time my medication had reduced to only 2.5mg of steroid, it became plain, as weeks turned to months without relapse, that remission wasn’t far off. My quality of life started to return slowly over these years. It was a bit like when your parents let go of your bike and you find yourself peddling. My confidence returned. I had training and got a job, I made new friends, and even started going for a weekly pint or two and chat at the local.
Do you still have any Behçet’s symptoms and how do you cope with them?
A recurring symptom that stands out for me is thrombophlebitis. For me it commonly occurred while sleeping but it would occasionally strike during the day. My calf and foot would suddenly go stiff and I would be gripped in shocking pain. I remember on many occasions reaching down to hold my calf and feeling the varicose vein twist and tighten for several minutes. The pain left me breathless at times and my calf sore and tight for several days. Today a week doesn’t pass when I do not wear an over-the-counter supportive calf length stocking for 3-4 hours.
I occasionally get a small mouth ulcer, and sometimes a red looking eye. These mostly clear on their own within 2-3 days. My most troubling symptom now is arthralgia. It appears either on a hand or foot. The last episode lasted weeks. I was taking 8 Ibuprofen a day and using a cream, but my GP couldn’t give me anything more for it.
How has Behçet’s affected your working life and what do you do now?
At times it’s been quite difficult for me to work while having Behçet’s. From my teens to my mid-twenties I couldn’t work due to flares, hospital stays and appointments. I’ve had difficulty with employers over hospital appointments. I’ve also had days when for several hours I have no energy; feeling like I’ve run a marathon.
Since 2017 I have been volunteering as a Gallery Guide at The Mary Rose Museum in Portsmouth, which is a fantastic world renowned museum. The staff and volunteers are friendly and great to work alongside. I share their interest in the museum, its exhibits, its aims and I enjoy speaking to visitors from across the UK and overseas.
When I’m not volunteering I like listening to music as I find it relaxing and healing for the soul. I listen to BBC R2 and Classic FM. I also read a lot, predominantly 20th Century naval/military history.
Do you have any tips for coping with Behçet’s symptoms that could help other patients?
Keep faith with your medication and your doctors.
Thank you to Michael for answering our questions!
Interview published 16/04/2021
Could your story help others?
We would like to share your personal experiences of diagnosis and living with Behçet’s, and we’d like to hear from a wide variety of patients, of all ages and backgrounds. We’d also like to hear from carers and/or family members of those affected by the condition.
If you’re a patient you might have some particular tips for managing your condition day-to-day that you would like to share to help others, or you might simply like to tell us your story of diagnosis or about a recent fundraising event you’ve been involved in. If you’re a carer or family member of someone affected by Behçet’s, you might wish to share your personal experiences of caring for someone with a rare condition. You can share as much or as little as you want with us.
If you are interested in taking part and would like to know more please email Deborah at info@behcetsuk.org