Monday, August 16, 2010

KCAT CAN: That all-important support system

My mom's rheumatologist, Dr. Esther Penserga asked her to give an inpirational talk last August 7 during the monthly meeting of Lupus Club (PGH Chapter).. My mom is sick, and she is takes care of me, another sick person.. But we get by in spite of it..

That all-important support system
by Maria Kathrina Lopez Yarza
August 16, 2010

In 2000, my mom was diagnosed with Systemic Lupus Erythematosus (SLE), a`chronic autoimmune connective tissue disorder that can affect various parts of the body especially the skin, joints, blood, nervous system, kidney, heart and some other internal organs.

Some symptoms of her disease started in the later part of 2000. She had joint pains and she could hardly move her fingers. She had hair loss, oral ulcers, low grade fever and butterfly rashes on her face. She did not know what was happening to her then.

A dermatologist said it could be post pregnancy effects so her scalp was treated with steroids but to no avail. Her oral ulcers were not getting better, she was losing appetite and that caused her gastro esophageal reflex disease.

Finally, she decided to see an internal medicine specialist. After a series of tests, include two ANA tests, it was confirmed that she had lupus.

She had no idea what Systemic Lupus is, how it could affect her. It’s a chronic disease, they said, and it’s going to be in her forever. Her greatest fear was death, that she would leave us soon.

Her rheumatologist encouraged her to join the Lupus Club, PGH Chapter, to enlighten her about the disease. She was hesitant at first, but when she met with other lupus patients with different manifestations of the disease, she realized that she was luckier as her case was a lot milder. Most of them were already being treated for their kidney problems, some almost bald, others were on higher dosage of steroids.

The support group is also for the patients’ family members to teach them to be supportive because psychologically, the disease affects the patient’s physical appearance. But my mom learned how to live with it, taking care of herself. She never obliged us. She is really a strong woman, a fighter.

In 2004, when I was diagnosed with my disease, Neurofibromatosis type 2, my mom set aside everything — her monthly meetings, her regular check-ups, just to be with me. She said she knew how it felt to be sick, and would never let me experience what she had gone through. She understood me more, gave me extra TLC (tender loving care), studied my disease and closely coordinated with my doctors so she would know what to do. She found ways to raise funds for my medications and never left my side when I was confined for two months.

My mom never complained, it was really unconditional love that I felt. She was also very resourceful, never stopping until she finds a solution.

Her doctor also admired her strength. Her lupus acted up in June this year but yet she never stopped taking care of us, she even managed to take care of herself just to get better.

Because of that, her doctor asked her to share with other lupus patients what she had gone through and how she was able to cope. I joined her in her talk last August 7, during their regular monthly meeting. In her talk she sincerely expressed her gratitude for being in the club as it was really a big part of who she is now according her. It gave her hope to move on and accept the reality, and with the knowledge she gained from it, she became stronger to face another chapter in her life, taking care of her sick daughter.


I too would want a support group for NF patients here in the Philippines. I tried searching, but I could not find one. I have joined NF groups from the U.S., and I am learning so much from them. We have different experiences, different manifestations of the disease. And sometimes I feel so blessed despite my disability; I have seen more severe cases than mine.

One of my dreams is to disseminate awareness of NF here in the Philippines. To date, I have met 23 people inflicted with it and I am continuously searching for more. In my own little way, and with the help of some of my NF friends, we were able to start with our vision to somehow share our knowledge about the disease, our different experiences, gave them hope to move on and accept life’s reality. And this means so much to me.

Together with one of my NF friends, we have created, Neurofibromatosis Friends (Philippines) on Facebook; to serve our mission and fulfill our vision; to give hope to those who are hopeless and to face life’s reality.

Being supportive validates accomplishments and it also validates our relationship if we show them their importance. I wish I could do more.

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