Lupus chicks #10: Isabel de Ron & Debora Jackel

Being a mother is hard enough for anybody. There are endless demands for attention, for snacks, lost shoes, homework, costumes for school plays, mending, lost toys, more snacks, peace talks and a bit of accident prevention. Around the world there are many mothers who are achieving all of this while battling lupus. Lupus is a disease that inevitably affects the whole family, and while there are many resources available for adults looking for information, Isabel de Ron found that there was nothing available for children in Spain. And so she wrote Magic Wand for Sale. This book tells the story of Paula, a 9 year old whose mother has SLE and has to spend many hours in bed. Paula finds a magic wand that will grant her one wish if she manages the near impossible task of catching a delicate butterfly with special Chinese chopsticks. Paula faces up to the challenge but she can't decide what to wish for. Should she wish for her mother to get better or for the most beautiful pair of pink sparkling skates she's ever seen?

Isabel de Ron, the author, and Debora Jackel, the illustrator, live miles apart in Spain and Australia respectively. They came together with support from the inspirational mothers at the Spanish Lupus Foundation and funding from several Spanish banks to tell this story  and help start a conversation about lupus amongst chilldren, particularly what lupus is and how it affects the whole family.

The book has been a great hit in Spain. It has raised the profile of lupus in the general public and granted the illness  "Rare disease" status making it a priority for government funded research. "The silence is the worst thing about Lupus. No-one wants to talk about it. Silence converts us into invisible beings" Nelida Gomez Vice Chairman of the Spanish Lupus Foundation.

Magic Wand for Sale is now available in English and can be bought from here. I'd love to tell you whether Paula catches the
butterfly and which wish she chooses but I'd hate spoil its genius ending for you! GET YOUR OWN COPY!!! Support a great cause!

Lupus chick #9: Marie Therese Aouad

At a time when she was supposed to be giggling with her girlfriend’s over last night date, Marie Therese was struggling to remember exactly who her friends were. She had neurological lupus, a type of lupus that affected her brain leaving her with gaps in her memory and unable to recognise familiar faces. She could not work and would easily get lost and disorientated in a crowd. Luckily she had a close family that was able to support her and strangely enough, no matter who or what she forgot, she never forgot her mother.

After battling with lupus for seven years Marie-Therese died from complications of a prolonged seizure. The lupus and the medications had caused her blood pressure to rise, giving Marie severe headaches and eventually a seizure. Since Marie-Therese was young and strong, and had been through much worse, her doctors did not panic and rush when he was told about the seizure.  By the time he got there, it was too late, Marie-Therese was gone.

Her mother Rebecca, a teacher, set up a Foundation in her daughter’s memory to help people in Ghana with lupus. The Marie-Thereze Aouad Memorial Lupus Foundation (MTAMLF) uses media to raise the profile of this disease. Rebecca recognized that many people in her area with lupus had been misdiagnosed as having another disease. Many patients were getting treatment for kidney disease, but the lupus attacking the kidneys and causing all the problems was rarely identified. The MTAMLF offers a free laboratory testing service where patients can be tested for lupus antibodies for free. They also offer monitoring of inflammatory markers and other tests. In the two years of its existence Rebecca had set up two clinics in Ghana’s largest cities: Accra and Kumasi.

The drugs for lupus are available in Ghana but they are expensive. The Foundation already supports 50 people with lupus and hopes to support some more in the near future. They dream of setting up patient support groups and counselling services as well as funding more research into the true burden of lupus in Ghana and possible solutions.

Lupus chick #8: Shaista Tayabali

Shaista Tayabali is a poet and writer living in a leafy green village in England. She has probably had lupus all her life - her first flare occurred in early childhood with high fevers, swollen joints and mouth ulcers, but she wasn't diagnosed until she was 18. She writes a blog at http://www.lupusinflight.com is finishing her Masters, and working on her memoir. Today she's treating us to a short story from her repertoire.
"I thought about different aspects of living with lupus - the most unique one medically with me is the damage done to my eyes - I have steroid induced glaucoma alongside all the other diagnoses of SLE, lymphadenopathy, vasculitis, hypothyroidism, etc etc...
But the most interesting aspect of having lupus for me, has always been the life of stories I encounter in hospital. I have spent so many lifetimes in hospital - and learned so much about compassion and humanity. So the thing that represents me the most would be any anecdote from any of my admissions.
Here is the one I have chosen..."

SHADES OF LOVE

Monday, August 27, Hepatology Ward

On some days, women cry at the same time. I don't normally but today someone else's crying was just that little too much to bear. I thought of curling up, but then I swung my legs off the bed, marched over to hers and hugged her tightly. Her husband looked startled, but good man, he leapt chivalrously out of the way. I took her so much by surprise, she stopped crying and started laughing. A reaction to a drug has caused her skin to be rubbed sore with itching and turn bright yellow with liver damage. I caught her jaundiced hands in mine and noticed the length of her nails.
"Now where are you off to?" she demanded.
"Scissors!" I called out bossily.
"Funny thing," she said, a few moments later."While you're cutting my nails, I don't feel like itching."

Years of hospital admissions have made me quite brave, but when the nurse advanced with the daily warfarin injection, I blanched.
"Go 'way," I pleaded hoarsely.
"Do you want to do it yourself?" she asked.
I perked up. Inject my own stomach? I took the needle and plunged and the job was done! The nurse hadn't really thought I had it in me. I looked up to find I had an openmouthed audience.
Hah!
"I can't believe you just did that," she said, shocked.
Some years ago, my big brother watched these daily injections administered into his sister until the pain and compassion in his eyes squeezed at my own heart.
But doing it myself? It was sort of... fun... in a peculiar way.



Find out more about Shaitsa in this interview with an English newspaper has more detail... .http://www.lupusinflight.com/2011/11/making-light-in-shadows.html

Lupus chick #7: Kelle Bryan

Kelle Bryan was set for life. She was part of one Britain's most successful R'nB groups, Eternal. She was touring the world, singing for the pope and dreaming of expanding into an acting career. The bizzare symptoms seemed to come out of the blue. She felt exhausted, she ulcers all over her mouth and her joints felt stiff and sore. She had no idea what was happening to her but everybody had a theory:
"You're coming down with the flu" her mother
"It's just symptoms of a post viral infection, it will pass" her family doctor
"You must have slept funny" her boyfriend
"You seem to have all the symptoms of HIV, it might be AIDS" another doctor
Eventually  a rheumatologist at Guys and St Thomas Hospital had the answer. "You have lupus, your  immune system is producing too many antibodies, which are attacking your body. Its affecting your skin, muscles joints and organs."

Once she understood what was happening, Kelle sought to take back control of her body. She began her treatment, started a healthy diet and took up kickboxing. She became a patron of The Guys and St Thomas Lupus Unit and campaigned to raise awareness about lupus.
But this wasn't enough, Kelle still dreamed of being a mother. Many women with lupus struggle to get pregnant or have multiple miscarriages. Any pregnancy has its risks but pregnancy with lupus can be fatal to both the mother and the baby. During pregnancy the organs that were just about coping, may be stretched to perform beyond their limits, the immune system can get abnormally stimulated and the drugs used to control the lupus can be dangerous to the baby.
A few years ago whilst visiting the lupus unit Kelle was told about a recent advance in medical research that would enable her to have a safe pregnancy. In 2011 she gave birth to a lovely little baby boy, who's birthday just happens to fall in lupus awareness month!

Please find out more about Kelle on her website www.kellebryan.co.uk
And check out this great resource on lupus in pregancy http://www.hss.edu/conditions_lupus-pregnancy-points-optimize-outcome.asp

Lupus chick #6: Shernae Smith

I know this blog has been pretty upbeat in

celebrating the great things people have done despite lupus, but sometimes the greatest comfort lies in honestly talking about the tough times.
Today we celebrate Sharnae "Nae" Smith, a beautiful woman who has the courage to tell it like it is.
"I was diagnosed with Lupus in year 2011. I can remember when I was in the doctor’s office awaiting my results because I had been experiencing the symptoms of Lupus for the past couple of weeks, and I had

finally gotten to the point to where I had to find out what was going on with my body. My rheumatologist walked in with his clip board, and put his head down. I knew it was bad news. He told me then that I had lupus. At that time I didn't know what lupus was or what it would do to me.  My life has been changed ever since! Not only had I gained weight from the various medications I was on, but I also experienced a lot of depression and anger. I had to learn to fight on through. It was so many people that looked up to me or needed me for something, I had to dig deep within myself and discover my true strength and joy in order to make it day to day. I suffered low self esteem and I felt sorry for myself all the time. I just couldn't wrap my head around the fact that I'd live my life as a good person, and now I'm battling a disease that I didn't know existed. I asked myself everyday, How could something so bad happen to me? Hadn't I done everything right in my lifetime? What did I do to deserve this? Truth is, as I live on, I believe I got this disease as apart of my purpose in life. As of now, I am a advocate for lupus and plan on starting my own foundation to help those that are fighting this. To all my people that are fighting lupus, the advice that I have for you is to not let this be a disability, but let it be wake up call to always enjoy life and never take anything for granted. We’re strong and we prove that every day that we wake up, and I hope my story one day can be a testimony to

someone who is going through the same thing".

Lupus chick #5: Rhia Sotomil

Todays lupus chick is pretty much
a super hero. Rhia Sotomil lives in Pavia in the Phillipines. After seven years in the police service, Rhia started to develop severe body pains, unexplained fevers, facial rashes and hair loss. After months of extensive prodding, tests and treatments, Rhia was finally diagnosed with Systemic Lupus Erythromatosis and was advised to give up her physically demanding job.
A few months of rest and Officer Rhia Sotomil was back to work, and boy did she came return with a vengance! Rhia is in charge of her local Womens and Childrens Protection desk where she is on call 24/7. This is no quiet job, in 2011 alone, her unit processed over 200 cases of child abuse, rape and domestic violence. With Rhia's help several rapists have been apprehended and her unit continues to to empower victims and their families to seek justice. Rhia also set up a program that educates employers in the area about safeguarding women and children. This initiative aims to reduce human trafficking in the area.
Rhia's lupus waxes and wanes. Her most recent flare up affected her kidneys and the high dose steroids have given her cataracts that force her to wear glasses. In a recent interview profiling winners of Phillipines Outstanding Policemen in Service, Rhia said "despite the physical prohibition s of my disease, this will not stop me from doing my duties and responsibilities as a protector and advocate of women's and children's rights and welfare".
I could go on and list more of Rhias accomplishments (mother, drug advocate, winner of numerous awards etc) but I wouldn't want to make you guys feel bad. All in all, Rhia's a superwoman, and lupus cant stop her.

Lupus Chick #4: Tiffany Nelson

Hello my name is Tiffany Nelson and I am a 13 year survivor of lupus. I was diagnosed when I was 15 years old, spent 10 days hospitalized and released on my sweet 16th birthday. Not being able to attend public school and be around my peers, forcing to miss school activities even prom left me and void and I went into deep depression. Throughout the years I've searched for answers about lupus and educated myself about lupus. I speak proudly and unashamedly about this invisible disease especially amongst teens who are battling the illness. Because I missed prom I have a project called operation her prom incorporation where I donate prom dresses to the girl who cannot afford one due to medical expenses. I've turned my pain into a purpose and will always educate individuals about lupus.

Instagram: @that_lupus_girl
Twitter: @ThatLupusGirl