My husband was diagnosed about 10 years ago with Behcet’s. Our teenage daughter was diagnosed 6 months ago and was recently found to have the gene linked to BD. Ulcer flair ups, joint pain and swelling, and fatigue are the most common symptoms those far.
Any other families experiencing BD among parents and children? Any strategies for copying?
hi MamaMouse,
Yes we are mum and daughter with Behçet’s in UK and I have met another 5 families with parent and child affected.
Not sure I have too many strategies except to be relieved and thankful to have the early diagnosis when our daughter was 4yr old. I know she will not have to go through teens and twenties unsure what the issue with ulcers and weird symptoms is, and can access the latest treatments. We find using topical steroid at first sign of an ulcer helps a lot and colchicine appears to be working the last 6 weeks.
Also I try to separate my fears about how her disease may progress from my own symptoms and experience. We do our best to be positive yet we adapt life eg not much sport happened Jan- March when she was flaring. Also invested more in the creative things she likes such as reading, art, music, nature, drama ...things that ulcers cannot interfere with if her body crashes. Even nudged her towards piano lessons, singing and guitar classes over playing flute as that was a pain in my teens with a mouth full of ulcers.
Although it would be easiest to be seen by Behçet’s specialists at the same time, we attend separate appointments so I can focus on one of us at a time. It can be emotional when it is your child suffering, harder to make decisions about treatment etc.
I think peer support is amazing and there are other mums of teen girls (on here) who may appreciate being in contact. I know 2 girls who found themselves at the same age and stage with GCSE exams and Behçet’s flares who benefit from understanding they are not alone with the rare disease. In Uk we have an annual Behçet’s family day coming up in June where we hope our daughter can meet some others her age and build a friendship over the years.
Hope this helps!
Hi MamaMouse
I have been diagnosed with Behcets now for approx ;- 6 / 7 years . I am male 53 years old and live in Northern Ireland . My daughter now aged 20 has been diagnosed with this horrible disease for over a year , after numerous outbreaks off Ulcer flare ups, joint pain and severe fatigue to name but a few well known symptom's . She is not on any course off treatment as yet , they are just treating the symptoms as they appear . I receive an infusion off Remicade 6 weekly with Mycophenolate 1000 mg daily which appears to help me greatly . I do not know off any strategies to help cope , sadly , just keep hoping through research and science a cure can be found for what we have to face .
cupples929
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