Mubashar

Next in our series of ‘Your Behçet’s Stories’ we chatted to Mubashar, who told us about his long journey to diagnosis, and how he has adapted his lifestyle since. Thank you to Mubashar for kindly sharing your story with us. If you’d like to take part in the series too, you’ll find all the details at the bottom of the page.

Mubashar is a civil engineer who lives in Leicester with his family and their pet rabbits, chickens and peacocks. Mubashar was diagnosed with Behçet’s a few years ago following major surgery for an abdominal aortic aneurysm (AAA), as well as a period of serious eye symptoms.

When did you first start to experience symptoms of Behçet’s and how did you get diagnosed?

When I was aged 26 and living in Stoke-on-Trent, I literally woke up one day seeing lines in my eyes which were disturbing my vision. It got worse and worse over two days so I went to Specsavers. The optician took at least two hours to examine me and she was very worried. She said it wasn’t normal and told me to get a taxi straight to the eye specialist at the hospital. I saw a couple of different specialists and they decided to do some laser treatment because there was bleeding in the blood vessels which they needed to stop. They suspected I had a rare eye disease called Eales Disease. I had to have 15-20 sessions of the laser treatment every 6 weeks. After 2-3 weeks I could see slightly better but obviously, then I would have to do another session. There wasn’t any permanent solution and the problem didn’t go away.

I used to be a very sociable person, I used to go to Manchester on the weekends and stay with friends. During one weekend away, I thought that I had contracted food poisoning either from some Keema Paratha that I ate, or from the combination of eating that and smoking some shisha afterwards. I started to get this really bad pain in my stomach. Painkillers didn’t do anything, so I went to A&E. They gave me some paracetamol. The pain went on for a month. I saw my GP but they didn’t think it was anything serious because of my age.

Every night the pain got worse and I frequently had to go and sit in A&E all night. One time they gave me co-codamol and I was on that every 6 hours for 2-3 months. After three months I was really worried about it because the painkillers stopped working.

My circumstances changed and I moved from Stoke-on-Trent to Leicester in 2017. One day someone recommended to me that I sought private treatment so I went to a private clinic and they agreed to do blood tests. My C-reactive protein (CRP) level was quite high but they didn’t know why. I was given an early morning hospital appointment and was there for two hours to have lots of tests. The gastro physician who checked me over suspected I had some kind of aneurysm. She sent me for an ultrasound and an MRI, and an abdominal aortic aneurysm (AAA) was confirmed. Several consultants came to see me as they were confused as to why I had this aneurysm and why it was getting worse. It had become a balloon! They said they had to do surgery which would be a minimum of 8 hours and it would be in another hospital. I was transferred by blue light ambulance to have the surgery the following morning, but I was kept in in case they needed to perform the surgery in the middle of the night. Mr Vainas (the vascular surgeon) was concerned that the aneurysm could burst if the surgical procedure was not performed in time. All of my family and friends came to see me. I didn’t know if I was going to wake up again after the surgery.

I had the 8 hour surgery and was sedated for three days afterwards. On the fourth day I woke up with all these machines attached to me and I couldn’t breathe properly. My infection had reached my kidneys as well so I was transferred to another hospital to be put on dialysis for a week. They then did a CT scan and they found leaking of the aortic homograft and it required immediate repair. The doctors were puzzled and tried to send my reports to lots of different hospitals. Luckily, a consultant at St Mary’s Hospital in London called Dr Gibbs, a vascular surgeon, agreed to perform more surgery on me as he thought I would be okay as I’m still young, so I was transferred by blue light ambulance to London. I had to have another abdominal aortic procedure, which took 12 hours. For five days I was sedated. I stayed in the London hospital for one month. At the time, there was no talk of Behçet’s. The doctors did not know what happened to me. Several medical tests were performed to find the cause of the AAA. They said most people who get this type of aneurysm are in their 60s, so I was very young and it was very complicated.

I was sent back to the Leicester hospital. I was in hospital for nearly six months and depression had taken my positivity. I had suicidal thoughts and it constantly run around my mind, so after a while I was allowed to go home in the daytime to spend time with my family. One night in mid-February 2018, I developed a very high temperature, and they couldn’t bring it down. Doctors tried different courses of antibiotics to bring down the fever. I was again put in the ICU ward. The doctors at Glenfield Hospital had assistance from different consultants to look into my case. The rheumatology department got involved and one of the consultants called Dr Shaffu recognised that from all my symptoms and medical history, it was definitely Behçet’s.

I was moved to her hospital and she started me on various treatments including steroids. My temperature improved. I was in hospital for a few days under Dr Shaffu’s team supervision. I was getting better but my eyes were worse. They were so blurry I couldn’t recognise the person sitting next to me. I was referred to ophthalmologist Dr Kumar and together rheumatology and ophthalmology started me on treatment of Infliximab infusions which I’m still on now and I have got better. My vision is still blurred and if I go out in the sunshine, I can’t really see anything. It’s too risky for the doctors to operate on my eyes after all the laser treatment, as I could lose my vision, so they’re going with the flow. So far, the bleeding has stopped and I still have some cataracts and inflammation in my eyes. Every day is a different day for me. Some days are better, some are worse. I try to keep myself busy with my chickens and peacocks! I had a big bunch of friends before I got ill, around 15-20 people, and while I was in hospital two of them came to see me in six months and that’s it. But that’s the way it goes.

You mentioned to us that nobody in your community has heard of Behçet’s. Do you find it hard to explain your disease to others in your community?

Yes. I have a leaflet from Behçet’s Centre of Excellence that I show people and I also direct some people to the website. I went to Pakistan a year or two ago and I spoke to a consultant there and most of them know about Behçet’s only in their studies and they don’t think it exists in Pakistan. I believe that it does exist and it isn’t being diagnosed, so people are dying due to lack of awareness of Behçet’s. Behçet’s has unusual symptoms such as mouth and genital ulcers. Many in my community assume that mouth ulcers occur due to stomach inflammation which is normal, and that they do not require any medical attention.

I’m trying to tell people in my community that if you have pain in stomach for more than a week, mouth or genital ulcers get it checked. I don’t want anybody else to go through this kind of trauma.

Upon the end of Covid restrictions I will arrange a fund raising event for Behçet’s research and development that will surely help people recognise Behçet’s symptoms. I got my aneurysm because of the aggressive nature of Behçet’s. It can attack anywhere. I am lucky that I am under observation at the Birmingham Behçet’s Centre of Excellence and rheumatology department in Leicester so I am doing quite well and it’s under control.

How did the pandemic affect your treatment?

My infusions continued throughout the pandemic, but unfortunately I did catch Covid, so I had to have a gap from the infusions to recover from Covid for 2-3 weeks. It took me another 4 weeks to get settled down and get my next Infliximab. Whilst I had Covid, my Behçet’s symptoms stayed stable and my eyes improved, but after having Covid, they got blurred again. It could have been caused by my body being weaker or by the delayed infusion.

How has your life changed since diagnosis?

I’m a civil engineer and after the surgery I was offered a job as a contracts manager which I tried for a couple of months but wasn’t able to do it. I’m alright on a laptop but sometimes I would have to go on site, but due to my eye problems, I was unable to do it as I can’t judge distances correctly. There was one occasion that I hit my head. I was wearing a hard hat, but I didn’t realise there was something above me. I spoke to my doctor and he agreed I shouldn’t work on site anymore as it was too risky. Now I work from home one day a week and assist as much as I can.

I now spend lots of time with my chickens. They sit on my lap! They don’t love you for any reason, they love you purely. They peck on the door when they want food! I always know when they are hungry!

My family is really supportive. Friends feel very sorry for me as my lifestyle has totally changed. I used to socialise and travel to a different town every weekend, and we would travel abroad two or three times a year as well. My social life has been affected too much.

Do you have any tips for others who may suspect they have Behçet’s?

If you have any inflammation such as stomach pain for more a few days, don’t take it lightly even if the GP doesn’t take it seriously. If the GP isn’t helping you, consider private treatment if you can. They don’t always consider that young people will be affected by such serious diseases. For me, it started with my eyes, mouth and genital ulcers, so get these symptoms checked as soon as possible.

If my Behçet’s had been found at an earlier stage, I could have contacted the Behçet’s centre, and they could have put me on infusions sooner, so I may not have needed to have had surgery. My journey was quite long and I don’t want anybody to go through that. Whether you’re 15 or 60. At any age, it could happen.

Thank you to Mubashar for answering our questions!

Interview published 27/05/2021

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

We look forward to hearing from you!