Newly diagnosed: Hello, I have recently... - Partners for Behc...

Partners for Behcet's
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Newly diagnosed



I have recently been diagnosed with Behcets. I came down with ugly, shocking, frightening and painful symptoms, and after 5 days of being hospitalized, we know what’s going on. Everything I read, including the “latest and greatest” book, shows me I might as well lose all hope for ever feeling healthy. Truth is I have felt sick in so many ways for over a decade, and I am only 26. I don’t know at all how to cope with this.

2 Replies

Hi. I know how you feel but now that you have a diagnosis you can start dealing with it. I went for years only diagnosed 7 years ago. Firstly try and have a positive attitude. I know it is so difficult when you are feeling so poorly. Keep a diary of what you eat, drink as this can make symptoms worse. I find coffee, chocolate, tea and many more foods make things worse for me. I had my first symptoms when I was 14, 43 years ago. I married had 4 children found life very hard at times but managed it. If you are under a consultant take photos of lumps bumps as they come and go and it can be very difficult to explain what this look like. Also write down how you feel. I now eat mainly organic food all fresh, no processed food ever. Natural shampoo, toothpaste, never use body wash. Wash clothes in natural washing powder. I find this really helps my skin from ulcers etc. I take a vegetarian linseed/flax oil for my inflammation and a vitamin D tablet as I am deficient. Other than that nothing unless I get a really bad flare up. You also have to learn that if you are exhausted then you must sleep. I hope things improve for you. All the best xx


Bless your heart. I have been diagnosed for a year now. I was quite lucky as had genital ulcers for two years and was then diagnosed.

It is a shock and hard to come to terms with at first.

Try and be positive. The hardest bit for me besides the painful ulcers is the exhaustion. I was very active, loved dancing but now I have to accept if I go out for the day, the next day I need to rest. I have never been someone who sleeps during the day but frequently have a nap now.Or if I cant an early night.

Medication will help you, it has controlled things a lot and the ulcers are not continuous anymore.

I dont know what part of the world you are but there are 3 specialist hospitals in Uk. The hospital of excellence which specialises in Behets. Anyone can be referred there

Take care 😊