“I had a rash all over. My fingers were marked and swollen. My joints were hurting and I had trouble passing stool. I found it difficult to even walk but somehow managed to get myself to hospital because I lived alone,” Dubai resident Shruti told tabloid!
It had all started with a rash — a rash which was casually dismissed by a reputed dermatologist. Sadly he was unable to diagnose that it was the beginning of the autoimmune disease lupus, and in a place such as Singapore, which Shruti says, had a high rate of lupus.
Earlier this month pop singer Selena Gomez revealed in an interview to the Billboard magazine that she had to cancel concerts in 2013 because she was diagnosed with the same disease.
“I was diagnosed with lupus, and I’ve been through chemotherapy,” Gomez, 23, had said. “That’s what my break was really about. I could’ve had a stroke”.
The day Shruti barely managed to take herself to the hospital was actually more than a year after she had seen the dermatologist.
“I still can’t understand that even though he was a really good doctor, it never occurred to him I could have lupus. If I’d had a proper diagnosis then, I wouldn’t have suffered as I did,” says Shruti.
“Initially the ointment he prescribed cleared my rash. But, soon after, I noticed severe hair fall. Chunks came off in my hand. I always had an issue with hair fall. So I didn’t realise it was a warning and went in for a hair treatment. But the therapists used laser and I felt I was losing more hair because of it, so I left it.
“Later, I developed a similar rash on the other side of my face. The doctor again prescribed the same ointment and it did disappear. This went on for more than a year before I got rashes on my hands too. They weren’t painful, just very visible. Being in the service industry it was important to look presentable at all times. Prescribed ointments didn’t really work and no one suggested any specific tests, despite the fact Singapore has a lot of lupus cases.
“It was only when I was admitted in the hospital that tests were done. The doctors wanted me to begin steroidal treatment immediately. But people back home dissuaded me and so I returned home to have a second opinion.”
According to website worldlupusday.org more than five million people worldwide suffer the devastating effects of this disease and each year over a hundred thousand new people are diagnosed with lupus. In the United States alone there are some 1.5 million suffering from lupus, reports the Lupus Foundation of America.
Lupus is a disease which mainly affects women between 15 and 44 but Dubai-based consultant rheumatologist Humeira Badsha says she has seen girls as young as 12. It is one of the diseases that may not necessarily be detected early, Badsha says, referring to Shruti’s late diagnosis.
“Lupus comes with many manifestations. That is why often there is delay in diagnosis. For example hair loss — everyone in Dubai complains of hair loss. Fatigue is another symptom, but then again we are all stressed and tired.”
Badsha says she’s seen hundreds of lupus cases in the UAE in her 10 year practice and agrees even though it’s a genetic condition the UAE environment could also be a trigger.
“It’s not just the UAE per se but the reason that lupus can worsen in sunlight. Plus, it can be triggered by hormonal changes. That’s why we see it strike when girls hit puberty. Sometimes young women can get lupus during their first pregnancy,” she explains the causes of the disease.
While pop icon Gomez has more or less become the “poster girl” for the disease, Shruti says that awareness is important to avoid delay in treatment.
“I was diagnosed with Lupus in 2008. But I cannot blame the doctors entirely as there was negligence on my part too. The doctors in Singapore had started me on 35mg of steroids but having been dissuaded and due to my own lack of awareness I’m responsible for the condition I am in. I’d had steroidal treatment for about three years till I came to Dubai. On the surface I look fine and no one can make out I am on medication,” says Shruti.
“I had been in Dubai for about eight months when I had pain in my elbows. Dr Badsha doubted it was because of the steroids and not lupus. She took me off them and gave me other medication, which had no effect. The pain reached my hips and knees. It was so painful I couldn’t even walk. I was depressed. “There was no family here for support except my husband. But he had to work. There were days when I couldn’t even get out of bed. I couldn’t even reach a washroom or open a tap. Also there were no support groups in the UAE as such then for lupus patients.”
Reports show singer and Gomez’s former boyfriend Justin Beiber was around during her chemotherapy. He would sing to her and comfort her by telling her that she’s the most beautiful girl in the world and it wouldn’t matter if she lost her hair or gained weight. Unlike Shruti, fortunately, Gomez didn’t lose her hair or gain much weight. Shruti agrees that if you don’t receive the right kind of emotional and mental support during the ordeal, it would become difficult to cope.
“Imagine at 25 I had a hip decompression surgery where they cut on both sides of my hips to insert a rod to drill holes through the dead parts of the bone so the blood flows again and it heals. For six months I was on bed rest. It’s all very difficult but with family support you do come back. I had started to doubt myself.
“In Dubai I was mostly alone as my husband was at work during the day. At least back home I had people around me. I could have three healthy, home cooked meals a day so I was energetic. If you are alone and in pain you even lose your appetite.
“When things don’t work you always look for alternatives to help cure or, at least, manage your condition. I turned to homeopathy because it doesn’t have side effects. A homeopath in Dubai told me to do yoga. Initially I was worried how I will be able to do it when I can’t even stand. Now I thank her because she sent me to the right teacher. I wasn’t push to do things. They allowed me to do as much as I could manage. In fact I feel their talks, and mental and emotional support worked more for me than the physical exercise. “Of course it took a lot of time and lot of effort on my part. Initially I wasn’t consistent but then I realised the more I did it the better I was. I started doing it two to three hours everyday.”
Seeing her progress, Badsha has put Shruti on biological therapy instead of steroidal. Shruti says she’s being monitored before she’s weaned off the medication and is eager to start a family, which is not possible till the medication is stopped.
“We have all the treatment available in the UAE,” Badsha says.
“There are different types of lupus, some severe, some not. The severe ones are treated with immune suppressant medication because lupus can attack the organs such as kidneys or liver. We use steroids and immune suppressants such as cyclophosphamide or cellcept.
“It seems Selena Gomez had a severe one because she underwent chemotherapy or immunosuppressant. But if it is not attacking your internal organs and is just rashes or joint pain we can treat with antibiotic substances such as hydroxychloroquine. It can be controlled more easily. But what’s important to know is that if it’s not treated properly it can lead to more severe effects.
“We’ve had people die because they stopped treatment or decided to go for an alternative treatment. I’ve lived in Singapore where we took care of thousands of lupus patients and trained at UCLA where my mentor was the writer of a book on lupus. We have all these young women and young women don’t want to take medicine because at 16-17 they feel ‘what can happen to me?’ Or they think this is making me fat or spoiling my skin. That’s where the problem lies.”
What I should know about lupus
- Lupus is not contagious. It cannot be transmitted sexually.
- Lupus can affect anyone but mainly women between 15 and 44 are affected most by it. At present, the ratio of women to men is 9 to 1. Plus Asian, Hispanic or African origin women are two to three times more susceptible to it.
- Presently, lupus has no cure. But with proper medication and good living habits lupus patients can lead an active healthy lives. The disease swings in periods of illness called flares, and wellness called remission. Selena Gomez is now in the remission phase.
- If you show any symptoms of lupus, get a complete blood counts test done immediately. If you have lupus they will all show as low. Kidneys are mostly affected by lupus. A urine test can determine if kidneys are working properly or not. A tissue biopsy can reveal the amount of inflammation and damage to tissues. (For detailed information go to lupus.org)
Types of lupus
There can be five types of lupus:
- Systemic lupus erythematosus (SLE) is the most common form and one which is referred to as “lupus”. This can affect many parts of the body in mild or serious tones. Though it’s seen mainly in women of child-bearing age, it can affect any time, in childhood or old age.
- Discoid lupus erythematosus is a chronic skin disorder. Angry red rashes can appear anywhere on the body, including the face and scalp, lasting from a few days to years, with recurrence. They can become thick and scaly and cause scarring. A small percentage of people with discoid lupus have or subsequently develop SLE.
- Subacute cutaneous lupus erythematosus are skin lesions that appear on parts of the body exposed to sun. They are known to leave scars.
- Drug-induced lupus is a form of lupus caused by medication. Some antiseizure and high blood pressure medication, and antibiotics, antifungals, thyroid medication, and oral contraceptive pills are known to have induced lupus. Symptoms are similar to SLE’s — arthritis, rash, fever, and chest pain — and go away completely when the drug is stopped.
- Neonatal lupus is a rare disease that’s found in newborn babies of mostly women suffering from SLE, Sjögren’s syndrome. Scientists suspect that this is caused in part by autoantibodies in the mother’s blood called anti-Ro (SSA) and anti-La (SSB). These are blood proteins that act against the body’s own parts. Symptoms at birth are a rash, liver problems and low blood counts, which disappear over several months. But neonatal lupus is rare, and most infants of mothers with SLE are entirely healthy. However pregnant women who known to have antibodies should be monitored by echocardiograms (a test that monitors the heart and surrounding blood vessels) during the 16th and 30th weeks of pregnancy.