Lupus

This morning, Mami ran to me to alert me on a blog by Buaya69.

"Papi, Papi! Michael's wife has SLE." she said.

"Is it?, Let me check."

SLE or systemic lupus erythematosus is not something that is alien to us.

In the year 2001, Mami went to her GP, complaining of a puffiness (swelling) on her face. What we thought was caused by lack of sleeps, turned out to be something else. Something more serious.

"I suspect it's SLE. Or Lupus." the doc said.

"Huh? What?" Mami was stunned.

"Lupus. It is actually an autoimmune disease, which caused the human natural autoimmune system to attacks it's own body, organ and cells. In particular, the connective tissue. It's also know as connective tissue disease." the doc explained.

"...."

"One of the symptom is rashes around the face" The doc continued.

"But that's because I was walking under the sun, and it was hot." Mami countered, feeling confused.

"Yes, but I am suspecting Lupus. Your skin is photo-sensitive, and reacts to UV light causing inflammation, thus rashes around your face."

"What causes it, this Lu...Lupus?"

"We don't know. Scientists and doctors are still looking for answers."

"Is there a cure for it?"

"No."

Later Mami was referred to a specialist for more tests. The tests came back positive. From the doctor's (a rheumatologist) explanation, we found out that it is difficult to actually pin point the type of the disease because there is no specific symptom(s) that points to a particular autoimmune disease and the diagnostic is quite general. It could be SLE (Lupus), Scleroderma, Rheumatoid arthritis and many more. And in Mami's case, it's still at an early stage and very mild. So the doctor has categoried it as Mixed Connective Tissue disease or Undifferentiated Connective Tissue disease.

She was given steroid (daily, on a low dose) to put the disease under control. This is important to ensure that the disease does not developed further and starts to attack the vital organs. Some of the symptoms she experienced were unexplained fever, fatique, skin rash, muscle ache, migraine and joint pain.

Then in 2003, after much consultations and advices from the rheumatologist, we decided to have a baby. Mami's condition has 'somewhat' stabilised, her symptoms has reduced and the doctor gave us a green light. She stopped taking steroids, but she had to take aspirin (apart from folic acid) to prevent blood clot. Her blood is 'thick'.

During her pregnancy period, Mami constantly went for checkups (including bloodtests), both with her rheumatologist and her obstetrician (her gynae), to monitor both Mami's and the baby's health. The rheumatologist and the obstetrician kept each other updated about Mami's condition. And 9 months later, Yiyi was born!! :)

Quoting the National Institute of Arthritis and Musculoskeletal and Skin Diseases webpage on SLE: "Although a lupus pregnancy is considered high risk, most women with lupus carry their babies safely to the end of their pregnancy"

And our Yiyi is a proof of that.

To Michael and Emily, be strong. I am sure everything will turn out just fine. Our prayers are with you. My advice is go for checkup regularly, both for the disease and the baby. If both of the specialists are from the same hospital, even better. They can keep each other updated. Best wishes from Papi and Mami.