Behcet’s Syndrome Community

Meet, discuss & support other patients or families living with Behcet’s Syndrome. Contribute to topics, or just share what's on your mind

millie15

My brave 15 year old daughter has finally been self-diagnosed with Behcets after 3 years of being told she had chronic fatigue by doctors and that there was nothing that we could do other than just get on with it.

It has been a hellish journey. Aside from the nasty systemic chills, fever, nausea, extreme exhaustion, pain, ulcers, sore eyes, she has anorexia nervosa now as well. I believe all of this was triggered by the HPV and influenza vaccines, as she had massive lymph node swellings post vaccine shots and a gradual deterioration with flu-like symptoms steadily worsening. We now have a good paediatrician and rheumatologist. She has started colchicine but it has only reduced the severity of ulcers. She may start azathioprine soon. If anyone has tried any herbal/natural supplements that have been helpful we'd love to hear from you. We have tried turmeric & nigella sativa, but not very helpful.

fmfandaid
moderator

Hi Janine,

We have a Facebook group called *Periodic Fever Syndrome Australia & New Zealand" which you can find under this link: https://www.facebook.com/groups/5202928846...
I would also suggest joining our international group from FMF (Familial Mediterranean Fever) and other autoinflammatory diseases (AID).
I'm sure you will get good advice here.

If you have any questions, please contact me any time. We have doctors collaborating with us and they always have useful information for us.

All the best to you and your daughter!

Malena Vetterli

Thank you very much!