Latest News

Living with Behçet's Disease: Suzanne


Suzanne, a graphic designer, lives in Cambridge with her partner Neale and daughter Kirana. Her world is so artistic and colourful that breaking with the series' black and white approach, some of the photos will be shown in full colour to allow the viewer to fully appreciate them.

At the moment Suzanne is in remission - but nobody can be sure how long for. She is taking this opportunity to work, create, and travel, and live life to the fullest before her disease flares up again.

Behçet's Disease Facts

Prevalence: Estimated to be around 1 in 100,000;, i.e. about 1,000 people in the UK.
Cause: Some evidence suggests there is a genetic predisposition, but likely triggered by environmental factors in those who are susceptible.
Description: An inflammatory condition; rare form of vasculitis.
Symptoms: Recurring mouth and genital ulcers due to mucous inflammation; joint pain; headaches; fatigue; stomach pain; eye inflammation. Symptoms tend to come as flare-ups and then subside for a time if treatment is effective.
Treatment: Mainly corticosteroids and/or immunosuppressants depending on the patient's symptoms and previous response to treatment; also anti-TNFs (tumour necrosis factor inhibition) and chemotherapy drugs. 
Sources: www.behcets.org.uk, www.nhs.uk



"I used to work full time in an office as a designer, commuting 40 miles one way to Essex. I got my Behcet's diagnosis while I was pregnant - but, being pregnant, they couldn't give any medication except paracetamol of course."


"Before my pregnancy I would always try not to miss work when I was feeling ill; I just got home, had some tea and went to sleep to deal with the fatigue, but I knew I couldn't cope with that while pregnant as well, so I had to quit. I only got diagnosed because I went to a new GP who noticed that I always had the same symptoms."


"It turned out my Behcet's is the refractory, drug-resistant type... I had a very tough pregnancy. We wanted two kids, but I knew once I got diagnosed that I couldn't go through this again. So my manager at work said, especially if I will only have this one, to leave and enjoy it; make the most of my time with my baby because this period will fly by anyway."


"People don't tend to understand that this condition can flip from day to day - one day you might see me working, all good, on my bike riding through town, and the next I will be in bed unable to get up. This is actually the second longest period I've been OK - about six months. I'm not on any immunosuppressants, just some meds to help with fatigue."



"Neale and I both used to travel when we were younger, and we really wanted to go to Costa Rica together with Kirana. We asked my doctor about it, thinking he'd advise against it, but he actually told me to go as soon as I can because we can never know when I'll have a new flare-up. Three weeks later we were in Costa Rica! It was absolutely amazing - Kirana loved it too. Her school was really supportive. She got to see lots of wild animals in their natural habitats, she loved it."


"The last round of treatment I did was a trial with interferon alpha. If my disease flares up again, I might not be able to take that again due to potentially having become resistant... there's only one other injection-based course of drugs that I could try, and after that it would have to be a stem cell transplant, maybe..."


"That interferon trial was very tough on me. I tried to time the injections so that the symptoms would be at their worst when I was alone in the house, but I couldn't have done it without the amazing support network of family and friends that I have. Even so, I couldn't get through the whole course - after 11 injections I had to just say: no more. And this was after 18 months and 3 rounds on another trial for Campath (now know as Alemtuzumab) which had failed."


"At one point I was in drug-induced psychosis. It was a friend's 40th birthday, and of course I wasn't out with her but I got desperate and called her; she came and helped me straight away. Just up and left her 40th birthday celebrations. If that's not a good friend, I don't know what is... Our friends made and delivered 2 weeks worth of food for us at one point so that Neale wouldn't have to worry about cooking on top of everything else. My parents also help a lot and have Kirana sleep over once a week to give Neale and me some time to ourselves, too."


[Neale] "Well, I'm not going to lie, things can still be hard for us because of the stress. We both took a personal development course a while ago to help deal with communication issues. "


"Yeah, things can get really sh*tty sometimes but we know not to add insult to injury at those times and aim for honest communication. It also helps communicating with my medical team when we have to discuss treatment options."



"For now, I can work freelance, which is great because it's flexible and I don't have to push myself to work when I'm feeling poorly. I'm glad I can use my skills to help the vasculitis and rare disease communities as well! My current project is designing a website for Cambridge Rare Disease Network’s festival called RAREFest."


"The first time I used my design skills in a rare disease context was when I entered an open poster competition by the Cambridge Rare Disease Network, about 're-imagining the patient journey' to be shown at the 3rd Rare Disease Summit. My idea was to highlight the rarer forms of vasculitis, including of course Behcet's, and the human side of these conditions to clinical professionals. One day I was having a nap and it came to me... Cluedo! Because what we've got is a complete mystery! (laughs) The murder weapons are the six rare forms of vasculitis. We got permission from Hasbro to use it publicly... I thought this would be a good way to highlight the trickiness of patient journeys to diagnosis because most people know and can relate to Cluedo and board games in general. It had a very positive reception at the conference, and went on to 'tour' several other conferences later on!"


"That year, I also created an illustration for Vasculitis Awareness Month that got lots of requests to be put onto a postcard, so I did that, to raise funds for Vasculitis UK. 'Winston' raised over £600!"


"Off the back of Winston's success, I created a Christmas illustration for Vasculitis UK as well, titled 'Hope'. That one sold over 4,000 cards and raised over £1,600 for the charity."



"As you can see, we're a very colourful family - Kirana is obsessed with rainbows and animals."



"I take two hours of art classes every week too, it really helps to be doing something like that. My teacher is encouraging me to experiment with various techniques."


"When I'm poorly I like to do family tree research! I've collected quite a lot of information and bits and bobs - no major scandals discovered yet though, just 'normal' things at the time like children being born outside marriage!"




Some portraits from 1888... my great grandmother's Valentine card... even photos of people I don't even know, they might not even be related, no idea!


This is a beautifully written postcard... but not beautiful words! He's not very complimentary at all, he says his mother is getting fat like a pig!



"We deliberately designed the lounge to be snuggly and cosy so I can lie down and sleep in here for a change of scenery from my bed. We have lots of board games because they're easier to play without much physical effort and still keep Kirana entertained. A lot of our renovation decisions have been about making life easier that way."


"Pete, our friend, is a builder and he and Neale are working on an extension to make the house a bit more practical and comfortable to live in. Neale bought the house a long time ago so it needs some work."



"We all love nature, animals and the outdoors - our National Trust membership definitely gets used a lot. These very scary guinea pigs are Kirana's. The garden is our haven especially during the house works!"


"We're so, so lucky with the people we have around us to help us, I can't even describe...
Our thoughts always go to what the hell it must be like for patients who don't have that?"

***

If you've enjoyed this glimpse into Suzanne's life, and want to spread awareness of Behcet's Disease and rare diseases in general, it's really easy to show your support by sharing this article simply by clicking one of the social buttons below!

***

Donations are also very welcome both to Findacure and Vasculitis UK to support their efforts.

Donate to Findacure | Donate to Vasculitis UK

***

No comments:

Post a comment

Bottom Ad [Post Page]

| Designed by Colorlib