MANILA — Clark Ferrer, 33, seems to be living up to a comic book superhero with his first name as he juggles his duties as an engineer, a father, and an advocacy group leader.
People who are close to him fondly call him Superman, a way of confirming his determination to excel despite the physical limitations caused by a rare type of spinal arthritis, which has been bugging him since he was 12.
“I may look normal but I’m unwell. I experience pain 24/7. I’m in pain even as we talk now,” Ferrer told the Philippine News Agency (PNA) in a recent interview.
Ferrer is suffering from Ankylosing Spondylitis (AS), a type of arthritis that affects the spinal cord, making it quickly swell and crooked.
Its symptoms include severe back pain, pain in the hips, eye problems, colon infections, psoriasis and heart problems.
According to the Philippine Rheumatology Association (PRA), no data is available on the prevalence of AS in the country but research studies show that it is so rare that it only affects 2 percent of the global population.
It is a hereditary disease that affects both children and adults during their productive years, limiting their mobility and affecting the quality of their lives.
"There's no cure but we can try to control the disease. We want to catch patients during their inflammatory back pain stages, especially those in young teens and early adults. Early recognition is best so we can delay the progression of the disease. There are drugs we could offer but not just pain relievers because they won't be enough," PRA president Julie Li-Yu said.
Ferrer’s first encounter with AS happened in 1997 when he experienced severe hip pain and nose bleeding after going home from an outdoor activity with his family.
“I was misdiagnosed with having leukemia at the Isabela General Doctors Hospital. Then, I was brought to PCMC (Philippine Children's Medical Center) where I was misdiagnosed with having rheumatoid arthritis and had been under steroids medication until 2003,” he said.
In 2004, the severe pain recurred and Ferrer was rushed to St. Luke’s Medical Center where he was finally diagnosed with AS.
“It was backed up by laboratory exams, HLA B27+ and MRI and it showed an early stage of bamboo spine. At long last, nalaman ko na kung ano talaga ang sakit (I learned what my real illness was),” he added.
24/7 pain
Ferrer said he has painsomnia, a condition characterized by lack of sleep due to severe pain. As he feels pain as soon as he gets up in the morning, he said it causes him to be anxious, irritable, irrational, rude, and depressed.
“There was a time when I can’t move and I was just lying on the bed. I asked my brother to buy me food, I tried to kill myself with a gun when he was away. But, I was lucky the gun didn’t work,” he said.
Ferrer said AS caused him to have many fears — fear that his disease would progress and may cause structural damage and physical degeneration and fear that he would become more dependent on others.
“I remember, my father told me, ‘Son, just die.’ Maybe because of frustration and depression after seeing that I’m always in pain. Now that I’m a parent, I understand how he feels when he said that. It pains him to see his son in pain,” he said.
Through the years, Ferrer learned how to manage the pain and accept that he will have to live with the disease.
He worked hard as he needed to invest in medications, anti-inflammatory food supplements, physical therapy and myotherapy, dry-needling acupuncture and colon cleansing to cope with the AS symptoms.
Translating pain to power
Determined to make the most out his life, Ferrer diverted his attention from his pain by doing worthwhile community activities and putting up businesses.
“I don’t take my disease lightly but I take it positively, like I always think that I need to get stronger so that I won’t depend much on my older brother who already has a family,” he said.
Ferrer added that he learned to trust in love and in the possibility that someone would accept and understand him, regardless of his shortcomings and health condition.
“I am thankful to the mom of my child because she understands me and she does the things I’m unable to do. Like in the supermarket, she carries the boxes of groceries,” he said.
To raise community awareness and create collaboration with government agencies and health professionals, Ferrer gathered other AS patients in 2016 until he formally established the Ankylosing Spondylitis Association of the Philippines in May 2018 which was registered at the Security and Exchange Commission last month.
The group has more than 100 members nationwide to date.
"Through this group, I want to reach out to people who may be experiencing severe back pain without knowing that it could be a serious disease like AS. I don't want them to be like me who had to suffer for a long time before I was able to get the proper diagnosis and treatment. I don't want them to suffer a lot like me," he said.
While AS patients receive financial aid from the government, Ferrer is looking to request for additional assistance from the private sector if not from the government.
“Before, we (used to) receive PHP80,000 from PCSO (Philippine Charity Sweepstakes Office) but now, we just get PHP20,000.
Biologics blocks or slows down the progression of the symptoms in the spine. I hope the government could prioritize us because we can work and contribute to the economy like me I’m part of the 'Build, Build, Build' project and some of us are doctors, lawyers,” he said. (PNA)
