In Memory of Sondos M. - Diagnosed at age 14

She was only thirteen when some skin rashes started showing around her joints, we thought it was a skin problem and we took a biopsy to diagnose it. The biopsy said it was chronic bolus disease in childhood and she took medication for that. A year later she started having joint pain and swelling, she couldn’t walk sometimes or get out of bed. I used to carry her like a baby at that time, then she started developing other symptoms like headaches and stomach pain.

My elder sister and I decided to do some labs and “ANA” test was included. It turned out positive, Anti SM and Anti- DNA accordingly.

We took the results to a specialist and she confirmed lupus and anti-phospholipid syndrome. My sister started taking medication but it worsened her condition. She had a very bad flare then her doctor said that she’s not able to manage her condition and she proposed another specialist. It was so hard to see my little sister struggling every day to do her normal life routine. We tried to help her in all possible ways - steroids had no effect but doctors insisted that she only needed a higher dose. After a year and a half struggling with lupus she had a very severe gastritis. She vomited everything she took for 4 days including her medication. Her case became worse so we took her to the hospital because she had a nonstop severe headache. 3 days after the admission she was diagnosed with cavernous sinus thrombosis. During this time she had double vision and wasn’t under the effect of any analgesic so she used to wrap her head or even hit her head to the wall because she couldn’t stand the pain.

After 14 days she was discharged and everything went fine. She knew that she shouldn’t skip any of her medication and that she needed to take care of herself like being her own doctor. In the meanwhile her doctor wanted to try monoclonal antibody. We needed an approval from her insurance first and the process normally takes up to 45 days.

While waiting for the approval she started developing cellulitis and we started antibiotics; 4 days later she started complaining of chest pain. I took her to the hospital just to check on her. She had peri-myocarditis with severe mitral regurgitation. She needed to be hospitalised for the second time.

Things didn’t improve for the next couple of days, on the contrary, they got worse. Her vitals were not promising at all she started developing lung congestion and anemia. Doctors couldn’t understand why her respiratory rate was around 77 so, they decided to intubate her to avoid respiratory fatigue. They notified us that it might be diffused alveolar hemorrhage with respiratory distress syndrome. Doctors decided that it’s better to start plasmapheresis as soon as possible along with pulse steroids, but it didn’t work. She was resisting the treatment, the flare was so aggressive that she started developing other conditions too like glomerulonephritis, incredible increase in the WBCs and bleeding from both lungs only in one night.

Although, she was completely fine before her second admission, I can’t believe it all may have started from a simple infection. I can’t believe we lost her so young and I can’t imagine how dangerous lupus can be. She had dreams and great expectations for her life, she deserved to live.

Unfortunately she is not here anymore.

I remember her telling me some funny jokes despite her severe episodes of pain. She once told me: “Aya! Haven’t you noticed that I’m being hospitalized every holiday, first time was at the New Year’s Eve and now the fourteenth of February?! Happy Valentine’s Day.”

She was tough, strong and stubborn against this disease, but lupus didn’t give her a chance, it took her away and left us with a dark, empty life.

I’ll never forget my beautiful loving and caring little sister, she was a piece of my heart, I treated her like my daughter. I don’t know why steroids didn’t work under any circumstances, maybe she was a unique case, maybe she needed another treatment plan. I’m not sure. What I know only is that 16 years are not enough but you can’t negotiate with fate.

I want to tell everyone that they need to look after their family members or friends with lupus, not to neglect even a simple complain or symptom and to take care of their hygiene to stop any kind of infection because no one would endure losing a beloved one.

NB: I will always cherish and remember your smile, my angel!