How our Support Group Began
by Lesley Reynolds
While visiting my sister-in-law, who was a librarian, we got on the Internet and looked up Blepharospasm and I was surprised to find that there was a Benign Essential Blepharospasm Research Foundation in Beaumont Texas USA, so was able to access quite a lot of information regarding this debilitating condition.
While on this site I noticed that there was a Support Group in Melbourne, their meetings being held at the Victorian Eye and Ear Hospital, so I phoned the Convenor, who offered to send me one of their Newsletters. In this letter I found the name of a lady here in Perth, so was able to phone her, she also knew of another lady and put me in touch with her as well, so now we knew we were not alone with this problem and suffering in silence.
This is when I decided I had better get a computer myself so that I could do some more research. Having worked in the Health Department for 15 years in Community Health and Mental Health, I knew the benefit of Support Groups for various ailments, so as a result of the run-a-round I’d had, trying to find someone to diagnose my problem, I thought I’d try to develop a Support Group for other people going through the same dramas.
I firstly sent emails to the Research Foundation in America, who posted me a lot of information in the form of pamphlets, booklets, and a set of audiotapes from their Annual Conference. This contained sessions from Neurologists, Ophthalmologists and sufferers of Blepharospasm, also Question and Answer sessions that were very informative. So I organised our first Support Group Meeting for May 2004 but did not advertise it sufficiently, hence only attracted 5 sufferers and their partners/carers. I had difficulty finding a suitable venue in the Metropolitan Area but eventually obtained a room at the Scarborough Community Centre.
Together with Lyn our Website Designer, we decided to have two meetings a year, so the next one was on 13th November 2004. By this time I’d made contact with people from Bunbury and Busselton in the south and as far north as Wanneroo, so decided to have the meeting at my home in Mandurah.With more experience and better advertising via the local community newspaper, 12 sufferers attended this meeting together with 8 carers. This was a very successful meeting, people travelling from Busselton in the south and Wanneroo in the north. It was so rewarding to see people identifying with each other and being able to share their coping techniques etc.
Lyn offered to set up a Website for the group, print letterheads and flyers etc. Once the Website was up and running it didn’t take long for people all over Australia to get in touch. As the website was linked to the Blepharospasm Research Foundation in America, they could access any information they required. We have had enquiries from a lady in Vietnam who was working with UNICEF, others from Queensland, New South Wales and South Australia. As the Support Group was already established in Melbourne I was able to give the Eastern States people their contact information. As many of the people who have this condition are over 60 years old, (we had one 82 year old lady who has been receiving Botox for 20 years) who do not have access to computers or the internet, it has been necessary to write to each person who made contact and I have posted copies of leaflets to help them understand their condition.
I had been bearing the cost of this so decided to approach a local Op Shop i.e., Mandurah Murray Mayday Club and ask them for a donation of $500. They were very generous and sent us a cheque for that amount to cover our incidental costs for stationery, stamps postage etc.
We had our third meeting in May 2005 and again we had 12 participants and their partners. We also had 4 apologies. We organised a committee and agreed to open a Bank Account to deposit the cheque and keep a set of books to show our expenses. We spoke about our next meeting to be held in November and agreed to hold it in the Metropolitan Area again. One of our members allowed us to use his Boardroom in Cannington for this meeting, so eliminating any cost. The members also agreed to ask members to pay a $5 membership fee to help cover costs as a light lunch was also supplied.
We had a publication advertising our meeting for 17th November 2005. It was put in the local community newspaper in Mandurah and radiated through their sister community newspapers in the metropolitan area and it attracted more people who are having the same difficulty as most of us have had trying to get someone to diagnose this condition.
We continued to hold twice yearly meetings in Mandurah until we found a venue at Cityplace Community Centre on the Perth Railway Station which proved convenient for most people to access and have been holding our Support Group Meetings there for about 5 years now.
In November 2007 our Support Group were privileged to be invited guests to a segment on Blepharospasm at an International Ophthalmic Conference held in Perth. This was certainly a plus to know that more awareness was being given to this condition. There were Ophthalmologists from around the world in attendance and Dr. Raiter facilitated this segment. Six of our members were given Botox injections in front of cameras and very bright lights which was portrayed on a huge screen. Not a pretty sight. This was to educate other doctors as to how and where to actually inject the Botox into the correct sites.
Other Guest Speakers were a Dr. Peter Savino from America, Dr. Justin O’Dea from the Victorian Eye and Ear Hospital and others. One important aim of our Group is to educate, firstly G.P’s and Opticians, as these are usually the first port of call for people seeking help for this debilitating condition. We now have Pamphlets printed and our members are encouraged to visit their local Optometrists, G.P’s and ask if they can be left on their Notice Boards in waiting rooms.
Another plus was finding mention of a special rose coloured glasses in the Research Foundation Newsletter. These are a specific BPI Tint with a number Fl-41. Dr. Savino brought some sample lenses to the meeting. I had to get new glasses about this time so took the samples to the Optician I was seeing at the time and a Laboratory here in Perth made up a pair of prescription glasses for me copying this FL-41 Tint. I am very happy with the results as they cut out the blue light and control the glare. In the meantime Specsavers were able to copy the tint so the group had two pair of fitover sunglasses made as samples for members to try before they ordered a pair for themselves.
We have found that they don’t suit everyone so having the samples has been a very successful exercise and they have been posted all around Australia and returned without a problem. We strive to have a Guest Speaker at our meetings and have been lucky enough to have had Ophthalmologists, Optician, Clinical Psychologist, Allergan Pharmaceutical Representative, and a Chiropractor from the Perth Brain Centre.