Do you live in Northern Ireland and have Behcets?

[1962duff]

Hi

I was diagnosed with behcets about 15years again and am having a particularly bad time at the minute. I live in Northern Ireland and cannot find any GP or Consultant who has an interest or understanding of this disease or who has any compassion for the people suffering the many symptoms of it. Are you from Northern Ireland? If so have you found anyone who has helped. I know I am not the worst case but this disease is getting me down.

Along with other things my main problems are recurrent ulcers, sore throats with crazy high temperature, severe headaches and pain in the bones of my face, bleeding gums, pain in joints and I have an aneurysm in my leg which ruptured.

Sorry for moaning and poor me but I wish I could get some good medical help.

[TonyWT Partner]

I am sorry to hear of the frustrations you mention you have experienced with your clinicians. I'm not sure if you are a member of the Behcet's Syndrome Society, as if you were you might have spotted in the latest Newsletter various contact details for individuals that might be able to help with queries, questions or concerns. Could I suggest therefore you email Fionnuala McKinley at [e-mail] who is our Northern Ireland Support Group 'contact' and she might be able to assist. I hope this might start to find a suitable way forward. T

[1962duff in reply to TonyWT]

Thank you so much for your reply it is greatly appreciated. I am a member of the Behcets Syndrome Society but I had not spotted the contact for Northern Ireland and I will now email her. Thank you again for your reply. K

[TonyWT Partner in reply to 1962duff]

K, Thanks for getting back. We seem to have a slight administrative issue with BSS email addresses, so you may have received a 'rejected email', as I did. Bear with us please, while it is sorted. T

[1962duff in reply to TonyWT]

Thanks I did get a rejected email. At least I know it wasn't me. K

[TonyWT Partner in reply to 1962duff]

Apologies for the delay. Still working on the issue to identify the correct person to assist. T

[MourneLass11 in reply to 1962duff]

Hi, I am a patient diagnosed in 1972 and we have set up an informal group for the last four years here in Northern Ireland. We had a Conference on B D today a year ago in the Wellington Park Hotel, sorry you missed it. Are you a member of B S S ? They are very supportive over the years, publish a newsletter about what the different groups are doing and about Centres of Excellence across the "water" in Liverpool, London and Birmingham. We are meeting in Lisburn Library on 11th November at 11 am. We did a scoping study with GPs and there were 80 patients recorded in N I making it equivalent to Japan. Please come and join us and we may be able to support you.

[1962duff in reply to MourneLass11]

Hi

Thank you for your reply. I will try to make it to your meeting in Lisburn on 11th November. However I am about 60 miles away and unable to drive due to the aneurysm in my leg but hopefully thing may soon improve. I am a member of BSS and it is great to know they are there. I would really be interested to know if you have you found a Rheumatologist here who has an interest in Behcets and who has been supportive ?

K

[MourneLass11 in reply to 1962duff]

Hi, I see in your replies an e-mail which is our point of contact as I help run the group with another, so let her know that you are thinking of coming too. We occasionally run workshops in Newry and Omagh to help patients in those areas. It will be lovely to have another member to join our support group.

[1962duff in reply to MourneLass11]

I have been having problems with Fionnuala's contact email address, the emails are being returned but I will keep trying. K

[cupples929 in reply to 1962duff]

hi I am from Northern Ireland also i have Behcets , diagnosed around 4 years ago . I was diagnosed by a Dr Gary Wright Rheumatology Royal Victoria hospital he also has a clinic at Musgrave park hospital . I attend his clinic usually every three months he is very knowledgable on our condition get a referral from your GP .

[1962duff in reply to cupples929]

Thank you for taking the time to reply. This is very helpful.

Karen

[lesleyg]

Living in Australia I’m not too sure of where specialists are or how long it takes to get to them. A lovely Dermatologist called Fergal Moloney was the person who diagnosed me while he was living in Australia. Sadly for me he returned to Ireland. He really cares for his patients and seemed to have a good knowledge of Behcet's Disease. He diagnosed me on the first consultation, after about ten minutes and immediately went to work on how to treat me. Hope that helps.

Lesley

[GlastoGal]

Hello!

Just found this post and I am feeling in the same position here in Northern Ireland. I’m currently under Rheumatology and Gynae in the Northern Trust with a working diagnosis of Behçets but not confirmed as they want to biopsy. I have been on steroids for one year, colchicine for 3 months and just commenced Azathioprine but I’m still feeling very misunderstood. I feel my other symptoms are being ignored and the focus is solely on ulcers and joints. My fatigue is terrible I’ve been unable to work for 4mths as well as other symptoms which may I’d may not be related!

Did you have any luck finding a doctor knowledgeable in Behçets?

[Scandal in reply to GlastoGal]

Hi, i am in Northern Ireland and in the same boat with all the symptoms but no help,

[GlastoGal in reply to Scandal]

Hi Scandal

I am under rheumatology and gynae in northern Trust but feel many symptoms are ignored as they do not fall under these specialties. Feeling very frustrated!

[Scandal in reply to GlastoGal]

I am with the Southern Trust, I have had fibromyalgia for over 20 years realy bad almost house bond and can't do anything, but this other thing started in December 2017,

[Legomum in reply to GlastoGal]

I heard they recently held a specialist clinic in Ireland (Crumlin national hospital ) for children with suspected or confirmed Behçet’s where they got together a team of professionals (Rheumatology, dermatology etc ) to assess them all. I know a few patients from the South are on this site and have met up informally in hospitals or at infusions. There was also a Behçet’s support group which met in the North back in November which Tony the chair of the charity Behçet’s UK went along to. I think Fionnuala and Ann were the main contacts but it was on the charity’s website too. Hope you can all connect up and share names of experts and experience.

[GlastoGal in reply to Legomum]

Thank you for your reply. I have recently met with Ann and Fionnuala at a Bechets meeting. Our frustration has been aired regarding local expertise and access to centre of excellence from NI.