Earlier this year my best-friend Desiree died. She was
diagnosed with Systemic Lupus Erythemasosus (SLE) in 2001 and she started a
constant battle against the disease she called “Loopy Lou”. Her lupus affected
her joints, skin, kidneys and heart muscle. The years of high dose steroids
affected her bones, her weight and her eyes, but nothing affected her attitude.
If we were ever out, be it a nightclub, rugby match or dinner party, Des would
be found telling someone of her latest lupus adventures. As her friend, I’d
heard all these stories before and often told her off for boring people who had come
out to have a good time. But I now realise that she was tirelessly educating
people, raising awareness about lupus and inspiring them with stories of what
she had overcome. Des was patient with people who judged her (especially me) because they
didn’t understand her daily challenges, and she forgave the friends who abandoned
her because she couldn't keep up with their crazy activities and adventures. On
a dark day she would distract herself from the pain by counting her blessings
compared to many other women with lupus across the world saying “Well, at least
I'm not in Darfur. How on earth do people with lupus over there cope?”
So this October,to celebrate UK Lupus awareness month and to honour her amazing soul, I want to give a
voice to women with lupus all over the world from Dublin to Darfur. Lupus is so
individual and even within the same country one woman’s experience can be so
different from another. So if you know anyone with lupus, please tell them to get in
touch. I want all your stories, tell me what you want the world to know about
lupus.
xx
Tamara
Twitter: @tbugembe
Email: tbugembe@gmail.com
You are truly missed Thelma! She was a beautiful spirit, with the strength of a lion! Gone but not forgotten! Loving you beyond the grave!
ReplyDeleteThis is great Tamara! Well, what can I say - I knew Desi and I know her Lupus did not define her. It didnt take away from her sharp wit and crazy humour; it didnt take away from her amazing sense of style or what can only be described as the most rigorous beauty regime I had ever come across (and trust me, she wouldn't let you off if you turned up with raggedy hair or less than perfect clothes!); it didnt take away from her creativity or her OCD with how she looked after her jewellery and accessories... As you can see, I could go on and on about how crazy Desi was! But what I also know is that she was a strong woman, intelligent, bright, thoughtful and caring and if there is one thing that I would like to contribute to her legacy is that for the time that I knew her, I wish I had understood more about what her daily challenges were with Lupus.
ReplyDeleteSo please support the initiative guys - I am!
Looking forward to hearing all of your amazing stories.
Love lots
Heather
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