We have a family friend who has suffered from Lupus for thirty-five years. As we are half way through Lupus Awareness Month, we would like to share her story.
Initially she felt very tired all the time. She had two sons under five and was expecting her third son when the family situation changed and she was left on her own to cope with three sons. Unlike the eldest two sons her youngest son wouldn’t settle and it was five months before he slept through the night. Naturally she felt tired even after sleep and although she visited the GP several times, he just said it was natural to feel tired with three small children.
Eventually she 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 she was treated at St Thomas’s Hospital but saw patients in wheelchairs & with disabled stickers & found it too much so she transferred to her local Hospital. She was given various drugs but they proved unsuccessful. Gold injections were tried but they gave kidney problems so the Gold injections were stopped. A Locum Doctor from St Georges’s Hospital, Tooting, thought that having her spleen out would help the platelet problem but the removal of her spleen made no difference. It was 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. Her Autoimmune system is damaged and her platelet levels have been as low as 1. Her joints become very stiff, especially coming up to an infusion of Retixamab. She has Thyroid problems, suffers from migraines and is prone to kidney infections and pleurisy.
She is also however, the most positive and up beat person we know. Recently retired at 67 after a long career supporting young children, her work ethic was excellent. She was a real ‘Girl Friday’ willing to help with any task in a cheerful manner. She made cakes for staff every Monday morning and would welcome visitors with a tea or coffee, despite being unwell or in pain. She is still very hard working, gardening, decorating, sewing, etc. She is always ready to help people and is a real inspiration to others with the belief you only get out what you put in. Living with lupus may not always be easy but if you have the right attitude, you can achieve anything.
If you or anyone you know has been affected by lupus, we would love to hear your story at firstname.lastname@example.org
For more information on lupus, including symptoms, triggers and some pointers, take a look at Lupus UK’s website