Dr Adel Fattah is a consultant plastic surgeon at Alder Hey Children’s Hospital in Liverpool and has a special interest in facial palsy and microsurgical reconstruction. He has been instrumental in the establishment of a specialist team approach in the treatment of Moebius Syndrome at the hospital.
At Alder Hey Children’s Hospital we see children from a wide geographic area and as such treating children with rare diseases is not unusual.
‘From my perspective the best way to deal with a rare disease is to try and find people who have experience in it. There are so many rare diseases you can’t be experts in all of them but you can usually find someone with more experience if needed. For myself it’s something called Moebius syndrome and we have tried to build a team approach that allows us to see as many patients as possible. We are able to concentrate on different aspects of their care which might include a speech therapist, a psychologist, a geneticist, all look at different facets of the treatment and care of the child. I would love to see this approach adopted for every rare disease but in the real world we have limited resources. However, many diseases have similar issues and so certain groups of rare diseases could be considered together in clinics, with a similar approach.
If we are faced with a condition that we really do not recognise that may be extremely rare then we occasionally contact colleagues around the world saying these are the features that we have, have you seen anything like this? And there are patients who are true one offs they’ve never been described before and these are the rarest of rare diseases.
I love treating rare diseases because my background was as an embryologist. I was interested in all disorders of embryology and growth and things like that, so I’ve always been interested in diagnostic processes and why these things happen. I think each doctor will have their own specific take on how they react to rare diseases. For me it’s very mechanistic, why does it happen and how can I fix it or find out more about it.
If I was to advise other consultants with regard to treating patients with rare diseases I would recommend treating the urgent things first, go back to basics and never hesitate to seek advice elsewhere. That’s pretty much it really.
You have to switch off from work so outside interests are really important. Sometimes you just can’t because certain cases, certain patients really affect you. You’ll be sitting there late at night and they will pop into your head and you’ll think what can I do or how could I have done that differently or can I try something else, so as a doctor you should switch off but it is not always possible.’
Surgery is a mysterious world to most of us and we often place surgeons on a pedestal but what happens if they have an off day?
‘There is a big team of people who usually work together and for most complex cases there is often more than one surgeon. If you’re having a bad day you just have to put that to one side. Actually it is very interesting that when you’re physically operating everything else goes out your mind and you become very focused just on the task. Perhaps It is a surgeon thing, where you just clear your mind of everything else that’s not important to what you’re doing at the time, I’m not sure. I don’t know why but I’m glad it does.
We asked Dr Fattah about rare diseases and their impact and if he believes awareness is important.
Because rare diseases don’t affect most of us why should anybody care? But you know this is something that’s really important, and it’s not part of just about rare diseases, it’s about equality for everybody. We talk about equality for race, gender, sex all that kind of thing. We have the Paralympics which is a great showcase for people who are disabled and they show that with support in the right areas you can achieve pretty much anything you want. If you want to win a gold medal then there is nothing to hold you back, so In the same way Rare Beauty is a project that highlights this to the general population to say hey you know what just because I have a rare disease doesn’t mean I should be confined to the dustbin or anything like that. I’m a human being too and I have needs and with the right support I can achieve or maximise my potential and so for that reason. I think it’s important we all know about rare diseases.'
The Rare Beauty project has been designed to encourage people to want to know more about what is happening in the images. We have introduced beauty into every day scenes that people with rare diseases find themselves and through these images we will tell the story of the people, their families, friends and hospital staff involved in their care. We are grateful to Alder Hey Children's Hospital for their assistance.