Emma

Next in our ongoing series of ‘Your Behçet’s Stories’, we caught up with Emma who told us about her diagnosis journey, and how she manages to live a full, happy and active life. Thank you to Emma for sharing your story with us!

We are looking for more participants for this series so if you would like to take part too, you’ll find the details at the bottom of the page.

Emma lives in Bedfordshire with her partner and her two guinea piggies Chilli and Pepper. She loves travel, and going to shows and music events with her friends and family. 

What symptoms have you experienced over the years, and how did you eventually get diagnosed?

It took me 14 years to get a diagnosis. I remember always having mouth ulcers but my symptoms really started to show when I had my first flare-up of erythema nodsum at about the age of 15. We went to the doctors about this and they just did not know what was causing it. I was really unwell and in a lot of pain. My GP did a lot of tests and I was admitted into hospital for a few days and came out none the wiser. I think we all hoped it was a one- off. However, it kept coming back but each time it would change. My mouth ulcers got worse, joint pain started settling in and the fatigue was really hard to deal with, however these symptoms didn’t always come at the same time and I didn’t think to link them together. I assumed I was just run down. 

Each time the erythema nodsum appeared I went to the doctors and would beg them to help me, only to be told I was a “grey area” and “too young”. They sent me for the same tests over and over again and the only thing that would come back was that I had high inflammation. My doctor called and said they didn’t know why my inflammation was high, and so it was left. I was referred over and over to dermatology, only to be released from the system after my appointment because, of course, by the time the appointment came through, I wasn’t in a flare.  

Then while on holiday my eye started to really inflame and become painful and red. I thought it was conjunctivitis so I went to the pharmacy, and called and paid for a doctor to come out, and none of the medications provided worked. I got back to the UK to be told I had conjunctivitis that had spread and caused inflammation, which I later found was not the case and it was uveitis.

The genital ulcers appeared when I was 29 years-old and I remembered years earlier a nurse once asked me if I had any because with my other symptoms it would match a “weird rare Mediterranean disease”. So I then Googled my symptoms and Behçet’s came up. I remember saying to myself “this is it, this is it!”. 

I called my GP about the genital ulcers and had the most horrendous appointment over the phone (during the Covid pandemic) who told me I had an STI without seeing me! I complained to the GP surgery and demanded a referral to the London Behçet’s Centre of Excellence who then confirmed my diagnosis.

What for you is the hardest thing about having Behçet’s?

I would say the hardest thing about living with Behçet’s is I live in fear of a flare-up and not many people understand how you feel. Since I have been on the right medications and a patient at the London Centre of Excellence my flare-ups have massively reduced, but I will always live in fear of it flaring up as it impacts my life so much. The lack of awareness from health care professionals can also make it difficult to access help when you really need it. 

You told us that you, for the most part, live a very full and active happy life. Would you like to tell us about what things have helped you and what things you enjoy doing?

Despite having Behçet’s, I’ve always lived my life to the full and since finding the Behçet’s Centre of Excellence my life and quality of life has massively improved. I have amazing friends, family and a partner who try their best to understand and support me.

I really enjoy booking days out or nights out, so that I have events to look forward to. I love going to any music event and musicals. My music taste is very varied. I recently went to see Beyoncé, N-Dubz and Harry Styles, who were all amazing! 

I love to travel. I would say the Caribbean is my favourite destination but I just love seeing the world and experiencing new cultures. My last holiday was to Canada and Alaska which was incredible.

I like going to countries other people might not go to, for instance I have been to Russia. When travelling now I always contact my GP for steroids so that I have them on standby in case I need them, which massively calms my mind! 

You did some fundraising and awareness for us in your workplace last year for Behçet’s Awareness Day, for which we were very grateful. What do you do as a job? How do you manage your work alongside having a chronic condition like Behçet’s? Do you get any accommodations such as flexible working?

I did the fundraising in my work place for my first diagnosed Behçet’s day in 2022. I am a qualified hairdresser and did hairdressing full-time for 15 years, but I found it quite hard on my body and decided to have a career change. I now work for the police as a 999/101 call handler and a radio dispatcher which I do really enjoy. It is a very fast paced job which can be very challenging, but I enjoy my work place. The management have been really good in giving me a flexi pattern, so I don’t work full nights as I found that very hard on my body. They also allow me two disability days a year to attend my appointments at the Centre of Excellence. 

What advice would you give to others with Behçet’s?

I would say to people who believe they have Behçet’s, don’t give up hope for a diagnosis. My advice for living with Behçet’s is try not to dwell on it and book the events that you want to go to, so you have things to look forward to.

Enjoy the good days as much as you can and when you have the bad days or flares, allow yourself time to rest, heal and don’t feel guilty or a burden! 

Thank you to Emma for answering our questions!

Interview published 26/06/23

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 useful tips for managing your condition day-to-day that you would like to share to help others, or you might like to tell us your story of diagnosis, or about how your Behçet’s has changed your lifestyle or your work life. 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!