British Empire Medal holding humanitarian continues altruistic work from bed as cruel auto-immune condition is turning her to stone
A remarkable humanitarian whose altruism has been recognised by a British Empire Medal is still helping others from her bed where she is in the late stages of a desperately cruel condition that is turning her to stone.
Mum-of-five Asal Shirazi, 57, has dedicated her life to helping thousands of vulnerable people, but despite outliving her prognosis by 14 years, little can be done to help her as her body succumbs to the rare autoimmune condition systemic scleroderma.
Now single, Asal, who is based in West London with her children, aged from 13 to 25, was diagnosed with the condition in which the immune system attacks connective tissue under the skin and around organs, causing the skin and tissues to harden and tighten, in 2003 and given five years to live with medication.
But, with her usual defiance, she has beaten all expectations, distributing face shields throughout the pandemic – donating about 1,000 to a local school together with snacks for vulnerable children whose families cannot afford them – saying: : “I keep going because it gives me a sense of purpose.
“My body is giving up and I’m so scared of anything happening to my brain. I have to keep going and I spend time every day reading and educating myself.
“There’s not much left for me now. My quality of life is really poor, but if I can help people then I still have purpose.”
Asal, who studied medicine at university and went on to mentor vulnerable adults and children before formulating her own ethical skincare products, was 38 in 2003 when her symptoms started.
She said: “Initially, my fingers were going completely numb and white and it would be really quite painful. I also started getting spasms in my stomach.
“At first, doctors thought it was early menopause, but nothing they gave me helped.”
She added: “After months of going back and forth to my GP, I ended up booking some private tests with a consultant rheumatologist.”
A private blood test sounded alarm bells with her doctors.
She said: “They told me that something was seriously wrong and I had to have an x-ray and an MRI scan.”
She added: “I remember sitting in the room with the doctor explaining to me that I had systemic scleroderma while a nurse held my hand.
“They said that without medication I had four to six months to live and with medication I had about five years. I was just in complete shock.
“I listened as they said to me that I should go home and spend quality time with my kids and if there was anything I wanted to do, I should do it soon.”
Reeling from her devastating diagnosis, Asal decided to take the doctor’s advice.
She said: “I’d always wanted a tattoo, but worried I would regret it so, soon after my diagnosis, I went and got my first one done.
“After all, I had nothing to lose now, so I had my belly button pierced too.”
She added: “I was in a marriage at the time, but that dissolved about a month after my diagnosis, sadly.
“There’s no cure for this condition and nothing can stop the deterioration, but my demise has slowed down thanks to medication.
“Still, I’m now in the later stages of the disease. I’m mostly bedbound and my breathing is becoming increasing difficult.”
Her deteriorated state has not stopped Asal from pursuing her charitable work.
Incredibly, she now mentors vulnerable adults and children remotely from her bed.
She said: “I attended a charity event to help sick Ukrainian children last week.”
She added: “I spent all day in bed to prepare myself for the exhaustion. I only went out for two hours, but I was in agony by the time I got home.
“The condition is making my teeth crumble and I need artificial tears and saliva.
“When I was first diagnosed, because of my background training and learning about skincare and formulations, I realised that very possibly one of the things that might have triggered this disease is the make up I wear.”
She added: “I used to use a lot of make up and just slap it on, but when I looked into it, there are a lot of chemicals in skincare that can cause adverse effects in people who might have a susceptible genetic disposition.
“So, I wanted to make products I could use, but also that my daughters would be safe to use, so that this would never happen to them.”
Asal set up her skincare lines Essentiel Vie and Jeunvie, which she hopes her children will carry on with when she can no longer be part of the business.
She said: “I’ve done the formulations to make the products as an ethical and healthy alternative to high street products.
“If I can leave something behind that will relieve someone’s suffering then that gives me a sense of satisfaction, that my life is worthwhile.
“I don’t benefit monetarily from my business, everything goes back into it and into making the products.”
One option that could have helped her condition was stem cell treatment, but Asal now fears that is too late.
She said: “There is the option of stem cell treatment which could prolong my life further, but it is not available on the NHS so will be expensive and my condition has deteriorated so much at this point that my quality of life will be too poor anyway.”
Instead, Asal has vowed to carry on for as long as she can for the sake of her children.
She said: “The kids initially took the news well, but as they’ve got older and my health has deteriorated, they’ve started to worry.
“I try to stay strong for my youngest – 13-year-old twins – and I have learnt to cope with my fatigue.
“Once the twins are in school, I will stay in bed until they come home, so I have as much energy as possible for them in the evenings.”
She added: “I try to hide things from them as best as I can. To them, I’m not a bedridden ill person, I’m just their normal nagging mum.
“My kids have all been raised to be selfless and they are all the kind of people who would be the first to help another person in need. I’m really proud of that.”
Still determined to see life’s positives, Asal is making the most of every moment she has left.
She said: “At the end of the day, life is not guaranteed. All I can do is my best to help as many people as I can.
“No monetary amount is going to either save my life or improve its quality, but it’s important that I leave a legacy.
“The work, including my ethical skincare products, is the legacy I will leave behind for my children.”
She added: “It’s a way for me to carry on after I’m gone.
“Hopefully, people will still be positively impacted by my work when I am long gone.”
To shop Asal’s skincare range visit: www.jeunvie.co.uk and www.essentielvie.com. For more information on Asal’s charitable work, visit: www.asalondon.com
