The UIG has now had over 100 individual enquiries from sufferers or their families and this number seems to be accelerating all the time, as the group is making its existence known.

Many thanks for all the responses and returned questionnaires. The group aims to provide good quality, balanced information and this will always be improved by good feedback from you. Please return the questionnaires if possible.

News

Address Exchange

Those of you who have indicated on returned Membership forms should have received a list of addresses or/and phone no.s of people who wish to contact other sufferers. If you have any areas of particular interest or experience it may be useful to contact the group so that this can be included in the list.

If you would like to be included in the scheme and receive an address exchange list then please contact us.

The following article has been contributed by Mr. Andrew Dick, BSc(Hons) MD MRCP FRCS(Lond) FRCS(Edin) FRCOphth, Consultant and Senior Lecturer at Aberdeen Medical School

Prospects in the management of uveitis

Establishing a Uveitis Information Group (UIG) has the potential to offer the necessary support, advice and information to complement the care given in the treatment of uveitis in clinics throughout the UK. The first newsletter introduced the group and provided information clearly on what the aims of the group are, what uveitis is, details of forthcoming information regarding treatment, what fact sheets are available, meetings fundraising and membership. This invited short column is to affirm support of the medical profession to the initiation and development of such a patient group. The research performed in university centres around the UK are continually improving our understanding of the biological mechanisms which give rise to these complex variety of 'inflammatory conditions'  affecting the eye. Although there is still much to understand, because of such research our treatment is now much more effective, offering patients hope in controlling their disease, maintaining vision and hopefully improving quality of life. 

In addition to infectious causes of uveitis which can be effectively treated with antibiotics, one of the most visually threatening causes of uveitis within the UK are termed "autoimmune'. In these types of uveitis the cells within the blood stream, which are part of our immune system and protect our tissues and organs against infection, are switched on to attack our own tissues. For example, one of the uveitic conditions called posterior uveitis is an inflammation of the retina and other layers that line the inside of the eye. The retina is essential for channeling light into nerve impulses which go to the brain to be processed into vision. The inflammation causes damage and destruction of the vessels which supply blood and oxygen to the retina and more importantly the cells that permit us to perceive light. We now understand some of the function of the immune cells mediating such destructive inflammation, although the whole process still remains complicated. One of the major cells which initiate damage is called a T cell and one of the ways to stop the inflammation is to switch the T cells off or tone down their effect. Because of the development of a variety of new drugs which combat T cell action and may be given as both drops or tablets, we can now better control the inflammation. Generally the more severe the inflammation the more it may be required to treat the inflammation by agents given by mouth or intermittently via the blood stream, which in turn have their effect on cells outside the eye, i.e. the blood stream, as well as cells which have entered the eye.

In the clinic the diagnosis and subsequent management of uveitis may often appear bewildering particularly when tablets and drop regimes are continually being altered by the Doctor so as to keep control of the inflammation. In addition, after long periods of drug treatment, surgery is sometimes required to sustain vision, such as cataract surgery. The UIG, via information leaflets and open access to talk to other patients with uveitis, will provide a medium as well as support for all suffering from ,or involved in the treatment of, uveitis. One of the drawbacks of any kind of treatment, but particularly for persistent inflammatory conditions, is the continual requirement for treatment and unfortunately in some cases the development of side effects from the drugs. The medical profession is acutely aware of the need to provide therapy which is effective, long lasting and without side effects. Our present therapy is effective and moreover with the right balance of therapies we can in many cases control the inflammation and maintain vision without severely affecting quality of life from the side effects of the treatment. With the continuing research work throughout the UK we are striving to achieve more efficient and specific therapies to give long term control and improve quality of life.

The need for Patient information by Phil Hibbert

It is clear that nowadays, much more than before, patients wish to find out about their own or family member’s condition. If information for patients is not easily available, people will certainly try to do whatever they can to find it. These days there are vast quantities of information that we may access. Some of the information is good, some is poor. Some of it may be far too detailed, some too simple. The information may come from magazines, newspapers, the internet, libraries, television and radio or by speaking to people who seem to have similar problems.

If, then, a good proportion of people affected by uveitis feel the need for information then it should be readily available to them without them having to go and search it out. This information must be;

Uveitis, much more than most other medical conditions, offers a huge challenge for patients to understand their condition. Why is this?

Uveitis is complex. As emphasised in the other information leaflets, there are many different types of uveitis. There are many different causes, there are different parts of the eye which are affected, one or both eyes may be affected, the severity of the disease may be extremely variable and so on. Even two cases of uveitis with the same specific diagnosis e.g. intermediate uveitis may be completely different for the patient’s involved, and so require different treatment and may not have the same outcome. It may, then be worth considering:

The fact is that many people will go and find out what they can anyway in the absence of any that is offered to them. For this reason good information should be made available to patients. This information is much more important though for the following reasons:

The more patients understand about their condition the easier it is for them to have a more realistic view about the future.

There are some inescapable facts: Some patients will suffer severe visual loss as a result of uveitis. It is also very important to know that many more patients will never suffer any visual loss at all. It is also a fact that due to the way the disease can change over time, and its complexity, the outcome may be very difficult to predict for some. It would be unfortunate and obviously undesirable if a patient had, for example, read some information about blindness being caused by uveitis and worrying about this if their own condition was most unlikely to cause them any visual problem in the future. On the other hand it would be equally undesirable if a patient had unrealistic expectations of a rapid cure if he or she had a serious vision threatening problem.

To avoid these sort of problems the main source of the patient information must come from the patient’s Specialist. That is, the patient must work with the doctors to understand what type of uveitis they have and what sort of outlook there is. Then information provided by groups like this one, or other sources is of great use to supplement and reinforce that information.

There are many advantages of patients building up an understanding of their condition. It is a lot more likely that, as patients, we would be happier taking prolonged courses of treatment, for example, when we had not had any symptoms for a long time. It would hopefully make it more likely that we do not start neglecting our treatment or check ups if we seemed to be trouble free for a while.

All in all Patient information must be a good thing but it must be remembered that if you can’t relate it to your own case then ask your doctor!

Many of us with Uveitis who would be eligible for registration do not register. Is this because we don’t know we could be eligible?

Do we think there is little benefit in registering?

Whatever the reasons may be and it is certainly not compulsory in any way, it is something we should consider. Why?

It would raise the profile of Uveitis in all the statistics kept on eye problems, which would help to promote the need for research into Uveitis.

It can open up all sorts of help with vision aids at work and sometimes financial support. In Scotland there is free bus, and rail travel to partially sighted and blind registered people.

Ask your G.P. or Staff at your Eye Clinic if you are unsure where you stand with this.

Uveitis Information Group is a charity registered in Scotland, no. SCO28439