Following are the 5 main concerns of UK patients who are Behçet’s disease sufferers.
They sum up the difficulties encountered in getting a diagnosis and dealing with the disease once it takes a hold, these examples are magnified around the world with each country’s ability to recognise and treat Behçet’s in an effective way.
There are many unusual symptoms that appear over a period of time and maybe not appear all together; this leads to problems with diagnosis. The local doctor is the first port of call and most have never dealt with a patient with Behçets. The average time to diagnosis in the UK is 12 years.
However the person can have ulcers of the mouth, legs, genitals, swollen joints, severe and continuous headaches and many other debilitating symptoms. They have overwhelming fatigue and feel really ill; they find it difficult to function properly on a day to day basis. A lot of serious complications can occur with the illness, for example, if untreated, blindness can occur very quickly and other serious health problems are a distinct prospect.
Patients can very quickly feel isolated and lonely when dealing with this illness. They feel overwhelmed. They can lose their confidence, their job, their income, and any relationship they had; they can become dependent on benefits that are difficult to obtain because of the intermittent nature of the flare ups.
This means they may have to see many specialists in different Hospitals and in different areas depending on their symptoms – Ophthalmologist, Dermatologist, Neurologist, Rheumatologist, Gynaecologist, Immunologist, Urologist etc… Referrals to these specialists are difficult to obtain and in some cases there is a ‘lottery’ for drugs that control the condition.
But if patients are lucky to get a diagnosis and see the correct Doctor then they are given powerful drugs, all off label, for the rest of their life that hopefully control their symptoms, but that can have serious long term side effects. What one patient can tolerate and feel better using, another patient may reject.