Helping Others after Being Denied Help
When Gary Ho was only 5 years old, he and his family were evacuated from Saigon, living in a refugee camp for six months before starting their new life in the United States.
“I still remember boarding the barge as Saigon was on fire behind us,” Gary recalls. “We were given a new start in America. We were very lucky. Like anything in my life, it has made me stronger. We were so lucky to have the opportunity to start over when so many of our loved ones could not, and we lived our lives with that gratitude.”
The ability to find a silver lining is one of Gary’s defining traits. It’s been a helpful characteristic, especially given the health challenges he faces.
In 1993, at only 24, Gary began experiencing severe pain in his right ankle and foot. After years of watching his father deal with issues of gout, Gary believed he, too, had developed gout and went to his primary care physician. At 24 years old, his primary care physician told Gary that he was too young to have gout, and dismissed him quickly.
Over the next 16 years, Gary’s painful attacks continued to increase in frequency, as did his trips to the doctor’s office. He was told over and over again that he, in fact, did not have gout. No tests were ever conducted, yet the various primary care doctors told him to maintain a diet free of red meats, fruit juice, and alcohol just in case. They also recommended adding sweet potatoes, whole grains, and cherries (a common diet recommendation for those with gout to keep uric acid levels low).
“I went to the doctors every time I had an attack, but none of them would listen to my needs. They didn’t take me seriously. They were dismissive and continually told me I was too young to have gout. Without proper treatment my attacks continued to get worse,” Gary recalls.
As Gary’s attacks increased, so did his pain. He began relying on assistive devices, including crutches and a wheelchair, to get around with less pain. Despite their unwillingness to seek out the cause of his pain, Gary’s doctor began prescribing him pain medication and steroids. He also relied on anti-inflammatory medications to keep the swelling down. Gary was able to work as a mortgage loan officer despite his pain, but was often limping to work or using assistive devices to get around the office. He was unable to be active with his young son throughout this period.
In 2009, 16 years after his initial attack, Gary’s health insurance changed from an HMO to a PPO, meaning he was no longer required to get a referral to specialists. He made an appointment with a local rheumatologist, and for the first time, Gary was given a series of tests to see what was going on. Gary’s uric acid level was over 10 mg/dL; anything over 6 mg/dL is considered high for men.
After nearly two decades, Gary finally received a gout diagnosis. Unfortunately, due to the lack of proper treatment over the years, he had developed chronic gout. It was severe. Chronic gout is characterized as having two or more attacks per year; attacks usually last 3-14 days. In Gary’s case, he was experiencing monthly gout attacks that had led to visible signs of joint damage and a nearly 20 percent loss of kidney function.
Gary was put on gout medication immediately. Months passed, but his uric acid levels were not lowering and he still needed assistive devices to get around. Soon thereafter, Gary joined a clinical trial for a medication designed to lower uric acid. Every two weeks for nine months, Gary underwent six-hour infusions. Following the nine-month clinical trial, Gary’s uric acid level dropped to 1 mg/dL. The medication is now an FDA-approved treatment for gout.
He still takes a “maintenance” medication daily to ensure his uric acid level remains below 6 mg/dL and is able to enjoy whatever foods he wants in moderation, which is important to Gary as he is a self-proclaimed “foodie at heart.”
Gary credits his rheumatologist, Christopher Parker, MD, with helping him get his life back on track. Dr. Parker listened to him and became a trusted advisor when Gary was struggling the most. He no longer needs assistive devices to walk and is even able to participate in low-impact workouts regularly. No longer reliant on anti-inflammatories or pain medication, Gary’s kidney function is now back to 100 percent.
“I am not afraid anymore of calling up my rheumatologist when I have a question or concern. I’m grateful that Dr. Parker gave me the proper support and care I needed to get back to the place where I am able to respect and appreciate the work he has done in restoring my faith in the medical community. He changed my life,” says Gary.
He remembers feeling lonely and frustrated, especially by the lack of information, and he doesn’t want other gout patients to have to go through what he went through. Gary and his first wife divorced, in part, because of the grief and isolation Gary was experiencing. He is now re-married and is even able to be active with his teenage son again.
“No one understood what I was going through. It affected every personal relationship that I had: my family, my friends, and the relationship I had with myself. No one would even listen, or if they did, they just told me to eat better and I would be fine.”
In fact, while gout is often seen as being tied to nutrition, diet changes alone, such as reducing dairy and alcohol—though helpful—typically aren’t a cure for most patients. Other common myths are that only people who are obese have gout (while it does put you at higher risk, it’s not always a factor); that gout only occurs in older people; and that gout only occurs in men, not women.
In 2015, to help provide support to patients—and help dispel myths and misinformation—Gary and Dr. Parker began a gout support group, The Gout Support Group of America, at Dr. Parker’s office. Eventually, they moved it online.
Today, there are over 10,000 people in their online gout support group. The two have also teamed up hosting free, educational events to teach other patients about gout. Gary speaks about his gout journey, and life with gout from a patient’s perspective, while Dr. Parker speaks about the options for treatment and finding a provider. Their mission is to teach others how to live a full and meaningful life despite gout and to dispel common misconceptions and stigmas. Eventually, they would also like to visit medical schools to educate doctors about the importance of patient-centered care and the patient-provider relationship, as well as treatment. Gary also is active with the Alliance for Gout Awareness, a nonprofit dedicated to helping people with the disease.
It took Gary a long time to get to the place where he valued his life. Now that he does, he works to empower other patients, including his own father, who suffered from gout for years before even considering conventional medications instead of strictly using home remedies.
“I’ve accepted the fact that I have gout. I am married to it. There’s no cure. When I reflect back, there are some very dark days that I have had as a result of my gout, but I appreciate what I have now,” Gary adds. “I think, now, I’m a good example of what managing gout can look like. I will always have to modify my life a little bit, but I get to be the person I want to be. I value my health and I don’t take it for granted. And now I want to pay it forward. We all deserve to thrive.”
— by Michaela O’Connor