September's Guest Blog - Brenda Ryder (Member of the Eclipse Support Group)

September's Guest Blog - Brenda Ryder (Member of the Eclipse Support Group)

I apologise for the delay in posting September's guest blog article. Lupus Awareness Month is now in full swing and National Office is buzzing with even more activity than normal! This month's guest blogger is Brenda Ryder who helped establish the Eclipse Support Group for people with lupus that experience light sensitivity.

When I was diagnosed with lupus in 1998 I was prescribed plaquenil and advised to wear sunscreen and a hat in summer. Although my other symptoms began to improve, my light sensitivity became increasingly severe to the extent that I was housebound. I wondered whether there were other members of LUPUS UK like me. An enquiry through News and Views elicited 8 affirmative responses - I wasn't the only person in the world with this peculiar problem! This modest band formed the Eclipse support group for LUPUS UK members with severe light sensitivity. Our aim has been to share experiences and practical ideas and we can make personal contact through the Eclipse Contact List. Thanks to LUPUS UK we now have a website eclipse.lupusuk.org.uk which has a Product List and other helpful information. Unfortunately many of our members are adversely affected by computers and need others to download the information. The Eclipse membership has grown enormously but we also get lots of enquiries from folk who are not official members.

In the early days I planned to become a 'night owl' and go out after dark. At that time fluorescent lights were sparse but I was alerted to the problem one evening in a restaurant when these lights triggered an alarming reaction. For some years I scouted around for places without fluorescent lights but then the EU brought in the ban on incandescent light bulbs and our group was really in trouble. The Spectrum Alliance group started by Ruth Calder and continued by David Price and the late Catherine Hessett has campaigned valiantly to retain incandescent light bulbs for those made ill by energy saving lights. Despite meetings with Defra, the Dept. of Health and EU officials and the support of leading medical consultants, it often feels like three steps forward and two steps back (or even the other way around).

People with severe light sensitivity can make their homes and cars safe by the application of Dermagard film to windows but they can feel like prisoners in their own homes. I can only venture out wearing a mask – an opaque fabric mask for substantial protection or a clear Dermagard mask for minimal exposure. I wish I could make do with the Dermagard mask as strangers are less abusive when they can see your face. Essential trips need to be made with portable blackout blinds and clip-on lights (from my considerable stockpile) and my dentist, optician and GP have been understanding and helpful.

My circumstances are easier than many others' as I have a supportive husband who does the shopping and uses the computer on my behalf. As we live in an active vicarage, I have people popping in and out. The only activity I go to is bell ringing as our bell tower has a small shuttered window. Because I am mostly stuck at home and I used to be a teacher, I became a respite carer for children with disabilities and this has enriched my life.

I feel great sympathy and concern for people with this condition who live alone and find everyday tasks a struggle (that could be my lot in years to come.) I think it is very important to raise awareness so that we can go out wearing our medical masks and not be subject to unpleasant comments. And if we can attain safe lighting we will be able to be part of society when the sun goes down.

For more information about the Eclipse Support group, please visit eclipse.lupusuk.org.uk/

The Eclipse group have a section in each edition of News & Views magazine with the latest developments in light sensitivity, letters from readers and advice on products. News & Views is sent to all members of LUPUS UK. If you're not currently a member you can join at lupusuk.org.uk/lupus-uk-sho...

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  • I have recently been diagnosed with SLE and APS. I am currently very light sensitive and am unable to venture outdoors in daylight like you. Fluorescent lights bother me too. I have been put onto mycophenolate to bring flare down but my rhuemy is hoping to put me back on hydroxychloroquine as it worked really well for my joints initially.I was wondering what medication you are on and if it has helped with your sensitivity as I dont relish the fact of being a nightowl forever?

  • Hi Simmer, I'm afraid Brenda isn't a member of this community so she isn't able to respond, she just wrote the article for us. I'm afraid I don't know what treatment she is on or whether is has helped with her sensitivity.

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