Lupus Awareness Week

Lupus is an incurable immune system illness, probably genetic in origin and mainly suffered by females. It can affect any part of the body and that's the danger.

Lyn has suffered from Lupus for thirty-five years. As we are in Lupus Awareness Month, we would like to share her story.

"Initially I felt very tired all the time. I had two sons under five and was expecting my third son when the family situation changed and was left on my own to cope with three sons. Unlike the eldest two sons, my youngest son wouldn’t settle and it was five months before he slept through the night. Naturally I felt tired even after sleep and although I visited the GP several times, he just said it was natural to feel tired with three small children.

Eventually I arranged to have a blood test, which showed anaemia, lupus and rheumatoid arthritis, although it took another ten years before ITP (connection between rheumatoid arthritis, lupus & platelets) was diagnosed.

Initially I was treated at St Thomas’s Hospital but saw patients in wheelchairs & with disabled stickers & found it too much so transferred to my local Hospital. I was given various drugs but they proved unsuccessful. Gold injections were tried but they gave me kidney problems so the Gold injections were stopped. A Locum Doctor from St Georges’s Hospital, Tooting, thought that having my spleen out would help the platelet problem but the removal of my spleen made no difference. It was then decided to try Retixamab, a chemotherapy drug and she has been receiving infusions every 6 months in 2 fortnightly, 5 hourly sessions for the past few years. At last, this treatment has on the whole, been successful.

Lupus brings with it many related difficulties. My Autoimmune system is damaged meaning my platelet levels have been as low as 1 before. My joints become very stiff, especially coming up to an infusion of Retixamab. I have Thyroid problems, suffer from migraines and am prone to kidney infections and pleurisy.

I do however, always try to remain positive and upbeat. Recently retired, I had a long career supporting young children in a school. I was known as ‘Girl Friday’, willing to help with any task in a cheerful manner. I'd make cakes for all the staff every Monday morning and would welcome visitors with a tea or coffee, despite being unwell or in pain. I'm still very hard working, gardening, decorating, sewing, etc and always ready to help people. I truly believe that you only get out of life what you put in. Living with lupus may not always be easy, but if you have the right attitude, you can achieve anything."

For more information on lupus, including symptoms, triggers and some pointers, take a look at Lupus UK’s website.

October 03, 2019

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