Well we had another sucessful conference attended by 27 members. Thank you to all who came along, to the speakers and the hotel who made the event such a sucessThe talks were very informative, the venue was great and the food was smashing! We had information leaflets (Vasculitis Foundation) on the individual diseases, information booklets on benefits, and services for carers, free samples of Sinus Rinse Starter kits from Neil Med, an information stand on research in Ireland (manned by Valerie Logan), and Christmas cards (some kindly donated by Vasculitis UK) and calanders for sale. We also had a short survey for people to fill in to give an indication of how long before getting a firm diagnosis and how many GP/Consultant/Healthcare Professional visits did it take. This is to provide firm data to support our bid for Specialised clinics. This will be rolled out to all members in the near future.
I’m attaching notes of the talks given and a photos. I hope they all open ok for you.
We had a good discussion this morning about where VIA is going. We decided to do several things
- Devise a short brochure to leave in GP surgeries, Clinics and Consultant offices. These should be distributed by members in the area and topped up regularly
- Seek funding/grants for this, possibly pharmaceutical companies.
- Raise awareness by using the media, giving our stories, publicising meetings and fundraising events, highlighting need for regional specialised clinics to ensure early diagnosis and prompt appropriate intervention when needed to prevent organ damage.
- Local Hospital information days, displaying our banner and giving information about Vasculitis in hospital lobbys. These will be manned by local members. (We did joke about our banner becoming like the Olympic torch being passed from county to county!)
- Raise awareness amongst GPs and Specialist nurses by volunteering to give information talks.
In view of the small number of attendees,(the hotel facilities were based on a minimum of 30 attending), we will review the options of holding the conference either annually or every two years.
Briefly, Prof Conor Murphy’s talk on ‘The Eye and Vasculitis’covered the difference between Opthalmologist, Opthalmic Surgeon and Optometrist. Two useful means of assessment are the Slit Lamp Microscope and the Fluoresence angiography of the retina.
The main cases seen in Vasculitis are
- Uvetis and Retinal Vasculitis
- Ulcerative Keratis and systemic vasculitis
- Granulomatosis with Polyangiitis
- Giant Cell Arteritis
Inflammation of the Uvea, and adjacent tissues involving the optic nerve, retina and/or Vitreous fluid (inside the eyeball), caused either by infection or auto immune disease.
Presents as red, painful eyes, photophobia(sensitive to light), and/or loss of vision. Can be treated with steroids.
Once eye/eyesight problems develop, review every 2 months. Treatment is by steroids and a 2nd line therapy ie Imuran, Cellcept, Anti TNF. Cataracts can be removed to improve vision
Poor Vision(can see 2/3 down eye chart), usually has sensory and neural symptoms and deafness since early childhood.
Mainly seen in Rheumatoid Arthritis, pain and redness in the eye which needs treatment. Corneal Transplant are effective
This involves the white if the eye and presents as red, painful in the eye itself and the orbit. Influximab has proved to be effective in treatment
Giant Cell Arteritis
Presents as headaches, aches and pains, tenderness in the temples, and acute visual disturbance. Main treatment is steroids.
At present St Vincent’s and the Royal Eye and Ear hospital are carrying out stsudies to determine quality of life with Eyesight issues.
The main reasons, someone with vasculitis will get referred is due to cataracts, Age related Macular Degeneration, Glaucoma and Diabetes
Things we can do to help our eyes
Diet, (omega 3&6 oils, flaxseeds are anti flammatory), protect our eyes in the sun, wear goggles when swimming and have regular eye checks.
Dr Eamonn Molloy talk ‘Advances in Treatment of Vasculitis’ was very informative, talking about Steroids, Cyclophosamide,Rituximab, Methotrexate, Anti TNF drugs, Aspirin, new drugs -Abtacept, Toncilizumab.
- He also talked about what we can do for ourselves- take medication and tell the drs if you are not taking it,
- Have regular lab tests to monitor medicine side effects, level of disease activity and disease complications.
- Be attentive to new/worsening symptoms
- Stop smoking 9this is like having a stick of dynamite in one hand and a match in the other)
- Careful diet, both healthy and balanced
Targeted therapies have revolutionised treatmentof inflammatory diseases, and research plays an important role.
Early diagnosis leads to early treatment=less organ damage and more likely to maintain good quality of life. Cannot always take inflammatory markers as indicators of active disease.
The presentations are by Dr Lisa Willcocks fro Addenbrooks Specialist Vasculitis Clinic, ‘Tell me more about Vasculitis’
Prof Mark Little ‘Dr I feel Lousy, am I having a flare?’ ( This is very fancy and takes a short time to load) I’m afraid I’m having difficulty attaching it, will try again soon when I can enlist some help!
and Vicky Fourie, Head Social Worker (Renal), Tallaght Hospital, ‘Living a Healthy Life with Chronic Illness’