Singapore mum loses fingers and toes to rare disease but remains strong for her son
“Sometimes I feel as if I'm being a burden to the family because of my illness. You see, it’s supposed to be me looking after my mum at this age. Now, she helps me to bathe, transfer me from the wheelchair to the bed, or she has to push me around..."
Singapore mum Zakiah Jaafar was just 14 or 15 when she started developing small blisters on her feet. Those were her first Buergers disease symptoms.
“The GP told us that maybe I wasn’t wearing proper footwear. So we didn’t give it much thought”, she tells in the Channel NewsAsia (CNA) series On The Red Dot.
Today she has lost all her fingers, except her thumbs, and all her toes.
Zakiah suffers from Buergers Disease as well as Raynaud’s Phenomenon.
Buergers disease is a rare disease of the arteries and veins in the arms and legs where the blood vessels become inflamed and can become blocked with blood clots. This eventually causes tissue damage that can lead to gangrene. There is no cure.
According to the MayoClinic, the exact cause of Buergers disease is unknown. However, tobacco use has been known to aggravate the condition.
Experts suspect that some people may have a genetic predisposition to the disease. It’s also possible that the disease is caused by an autoimmune response in which the body’s immune system mistakenly attacks healthy tissue.
- Pain that may come and go in your legs and feet or in your arms and hands.
- Inflammation along a vein just below the skin’s surface (due to a blood clot in the vein).
- Fingers and toes that turn pale when exposed to cold (Raynaud’s phenomenon)
- Painful open sores on your fingers and toes.
Zakiah has lost all her fingers, except her thumbs, and all her toes, but she fights on, for her 6-year-old son, Ahmad.
She recently put off a hospital visit and bore all the pain, just to see her little one’s preschool graduation.
“I might not be able to see his other graduations. I’d rather fight, and go and see (this one).It’s only kindergarten, but it’s still something that he has achieved…” says the proud mum to CNA.
Zakiah’s condition is extremely painful. Currently, a home nurse tends to her wounds. Every dressing though is a nightmare.
“The pain is like having someone rip off your skin, and then putting salt on it,” she reveals.
Her son knows that mummy is unwell, says Zakiah, “He sees that something’s wrong with Mummy, but he can’t do anything about it…”
The very next day after his graduation, she had to be rushed to hospital in an ambulance.
“Don’t be naughty. Stay with grandma. Mummy will always be near you. Mummy will come back soon. Please pray for Mummy’s speedy recovery”, were this mummy’s words to her son.
As Ahmad enters primary school, his strong mum hopes she can help build his confidence.
“I don’t want him to grow up to be negative. I want him to grow up, no matter what circumstances are in his way, (to be) able to pull himself out”, she says.
Surviving the disease hasn’t been easy for this single mum, and she has to depend on other people to even feed her.
But she is thankful to 2 very important people in her life – her mother, and her best friend.
She has been friends with Ms Siti Aizura Kadel for nearly 20 years now. They used to work together at the Singapore Zoo.
She hopes their friendship will last forever.
Zakiah’s first best friend however, remains her 68-year-old mother, Musliah Ahmad.
“Sometimes I feel as if I’m being a burden to the family because of my illness. You see, it’s supposed to be me looking after my mum at this age. Now, she helps me to bathe, transfer me from the wheelchair to the bed, or she has to push me around”, she tells CNA.
Even today, Mdm Musliah’s hopes and prays that one day her daughter will be fully cured. “I’m very, very scared of losing her,” she says…
The illness has taken a toll on Zakiah’s family. They try to cope with the S$250 or so in CPF money that she gets every month, and about S$350 from the Islamic Religious Council of Singapore (Muis). Muis also recently volunteered to pay for some makeovers in their flat.
As Zakiah is unable to work, the Medical Endowment Fund (Medifund) pays for the hospital bills and medications.
Coping with the pain and disability have not been easy for this mum, and it would have been easy for her to sink into a sea of depression and hopelessness. But she stays strong for her family.
Every new day remains a gift for this fighter.
“Waking up another day is a gift … because I might not know whether I’ll get an infection today or tomorrow,” she tells CNA.
“Anything that can happen will happen, so you have to be thankful for each day that you have and for each person that comes into your life.”
Here’s hoping and praying for a miracle…