Jordan

Next in our series of ‘Your Behçet’s Stories’, we chatted with Jordan about his journey to getting his Behçet’s diagnosis, the difficulties of being considered vulnerable to COVID-19 as a father, how walking helps him, and much more! Many thanks to Jordan for sharing your story with us. If you’d like to be interviewed for the series as well, you’ll find all the details at the bottom of the page.

Jordan is 33 and lives in Hull with his partner. He is also the father of two little girls. He works as an account manager for a food manufacturing company, and has a keen interest in theatre and the arts, as well as football and films. He was diagnosed with Behçet’s just over three years ago and is a patient at the Liverpool Behçet’s Centre of Excellence.

When and how did you get diagnosed with Behçet’s?

It began in December 2016 when I developed recurring bouts of tonsillitis. Then in March 2017 I got epididymitis, which is an infection of the tube that is connected to the testicles. The epididymitis kept coming back and I needed several courses of anti-biotics.

One day at work, I got up to leave my desk at the end of the day and realised I was in excruciating pain in my back and tummy. When I got home I was in so much pain, an ambulance had to be called out. At the hospital I was sent to urology and I was told it was a very severe case of epididymitis. My temperature was 39 degrees! I was treated in hospital for 4 nights. When I queried why the infection kept coming back, the consultant said that because of my age, it was likely due to a Sexually Transmitted Infection (STI). I knew 100% it wasn’t that, but that was the only explanation they could give me. 

Lots of STI tests followed. They all came back negative. Over the space of about 6-8 months, the epididymitis kept coming back. It got to the point where I could just walk on the ward at urology and the doctors knew who I was. After further tests, including a cystoscopy, they referred me to an infectious disease consultant who did a variety of blood tests, but everything came back negative. The doctors were all stumped.

Then I developed blurred vision in my right eye. Initially I thought it must be a side-effect of one of the many anti-biotics I’d been on. The urology department agreed it was likely to be the meds, but they referred me to ophthalmology to get it checked. The first ophthalmologist I saw didn’t take my other symptoms into consideration, but he sent me for an MRI. However, it didn’t show up anything, so he referred me to one of his colleagues. I got referred to a woman who is my current ophthalmologist. She is one of the nicest people I’ve ever met and she arranged for me to have a CT scan and a PET scan. She said to me “I think it could be something called Behçet’s disease“. By that time, I’d already been researching possibilities myself so I’d already read about it. She referred me to rheumatology and she diagnosed me with uveitis.

There is a history in my family of Crohn’s disease so I got referred to gastroenterology as well. I had tests done, and Crohn’s was ruled out. I was started on steroids which were wonderful! When I was on 50mg I felt like superman! I had colchicine too, which was also brilliant.

My consultant in Hull told me they couldn’t officially diagnose me with Behçet’s, however they treated me for Behçet’s anyway. I came off steroids and went on azathioprine which went okay at first, then suddenly I developed a fever and felt very unwell. I had some tests at a walk-in-centre and they found blood in my urine, so I was sent to hospital straight away. Initially they just thought I had flu, but it turned out that it was the azathioprine which didn’t suit my body. As I’d been admitted to hospital on a Friday night, and no rheumatologists were available over the weekend, I had to stay in hospital on the stroke ward, which wasn’t the nicest experience. I remember one doctor came to see me who said to me he had just had to Google Behçet’s disease because he hadn’t got a clue about it! To be fair, he was probably a stroke consultant and was trying his best. 

On the Monday, a rheumatologist came to see me and confirmed it must have been the azathioprine that had made me so ill. He also told me that the epididymitis I’d suffered from was a really common Behçet’s symptom for guys. I had other Behçet’s symptoms, like ulcers, skin lesions, joint pain and brain fog. I tried other medications, which I felt fine on, but when I got my blood tested I was told my liver enzymes were off the chart and I needed to stop taking them. On one occasion I saw a different rheumatology consultant who wanted to stop all my meds and see what happened! I got in touch with my ophthalmologist and I asked if she could refer me to the Liverpool Behçet’s Centre of Excellence. 

At my first appointment I got to see Professor Moots, who is one of the loveliest men you could meet and he gave me my Behçet’s diagnosis. 

I agreed to take part in the Bio-Behçet’s trial so I started on roferon for 6 months. When that ended I was put on adalimumab (humira) and since I’ve been on that, things have been under control. I still get some bad days, when I have joint pain or brain fog, but when I see pictures on the Forums of how bad things can be for others, I count myself to be very lucky. I’m fully aware that my case is mild compared to others. 

What is living with Behçet’s like for you?

For me personally, as my symptoms are now under control, it’s more of a mental challenge than a physical one. The current Covid situation makes it harder. I have two little girls and I want to be able to cuddle and kiss them, and I’ve got to because they’re my kids and they need to be shown love, but inside I’m petrified because I’m obviously immuno-suppressed and extremely vulnerable to the virus. 

There are times I can put Behçet’s to the back of my mind, but then there are reminders, like when I received an NHS letter in November reminding me of how vulnerable I am to Covid. 

I get help from my new partner, who is wonderful. She’s really understanding and helpful. I couldn’t ask for anything more. But at the same time, there’s that sense of feeling as though I’m useless and like I’m a burden. 

Even the days when I do feel a bit rubbish, I just plough on. I know others don’t have the option and can’t get out of bed, but on my bad days I take some paracetamol if I need to and I just crack on.

How do you manage your symptoms day-to-day and do you have any tips for others?

I find walking really helps, both physically and mentally. Getting out and going for a walk, especially away from the city just clears your mind. I might get a bit of knee pain or hip pain, but it clears my head.

I’m a massive believer in positive mental attitude. It’s like if you have a cold or flu, if you lay on the sofa all day you feel rubbish about it, whereas if you get up and do something, you still feel a bit rubbish, but you feel better for getting up. For me, trying to stay as active as it will let me be is important. I know I won’t be running a marathon, as I used to play 5 a side football, which I can’t do anymore because it’s just a little bit too much. But for work we have a charity game once a year, and I take part in that. However, I do get a reminder the next 3 or 4 days afterwards that I’ve probably overdone it.

Swimming is also something that in future, I want to get into when we can because it’s low impact on your joints. 

What external support do you find the most helpful in managing your Behçet’s? 

I enjoyed Amdram (amateur dramatics) pre-Covid, although mentally it was tough sometimes. Remembering lines is more difficult now than it used to be as I’d sometimes have bad brain fog in rehearsals. Amdram is my escapism. The positive effect it has for me is massive. While performing, all the bad thoughts go away and it allows me to feel “normal”, even if it’s for a short period of time.

My partner is a huge help. She is an assistant psychologist for the NHS so she’s very clued up on mental health and she always suggests if I’m having a rubbish day, to do things that make me feel good. For me, I love to bake bread, because I enjoy doing it. So, if I’m having a bad day, I’ll bake a loaf of bread for a couple of hours. It takes my mind off things and I enjoy it.

As a patient, how do you find going to a Centre of Excellence?

I’ll never forget my first appointment there. When you walk in they have a sign that hangs from the ceiling with an arrow pointing to ‘Behçet’s Centre of Excellence’ and when I saw that it felt like a weight had been lifted from my shoulders, because you know that you don’t have to explain anything, and they know exactly what you are talking about.

When you go to the Centres you’re there for a few hours. Whilst you’re in the waiting room there are other Behçet’s patients to chat to, as well as Jackie, the support co-ordinator who is absolutely lovely. She asks if you’re having any issues with work or anything like that. They just sit and have a chat with you. The nurse asks you for an update since your last appointment, gives you advice, and then you’ll see the eye consultant, and then a rheumatologist. You might see a dermatologist, and maybe a psychiatrist. Then you see Prof Moots at the end, and you can tell he’s read everything about you. Honestly, he’s one of the most wonderful gentlemen you’ll ever meet. You can tell that he really cares. At my first appointment he said, Jordan this is going to be a bit like an episode of “This is your life” and he told me all the things that he knew about me and that was only the first time I met him.

I’d really recommend going to a Centre of Excellence if you can because they’ll lead your care. In between appointments I get continued support from my consultant in Hull and my GP.

Thank you to Jordan for answering our questions!

Interview published 22/01/2021

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!