Like Mother, Like Sons: Part 1
I have been blessed over the years to meet some amazing chronic illness patients and patient advocates. Thousands of people living with different conditions differently. And while we all are on different paths, at different points, we are all climbing that same mountain.
But, for me, that difference made me feel a little, well, different. I was diagnosed with AS when I was 12, a good 10 to 20 years before the average. And while I have come across a few patients who were diagnosed as young as myself, they were few and far between.
That is why I have been so fortunate to get to know Brenda Zamora, 32, and her sons Miguel, 15, and Paul, 11.
For this two part article, I sat down with Brenda (okay, I emailed her) and asked them to share their stories about being diagnosed, managing their symptoms, and being a parent with RA to children with AS.
Getting a diagnosis
Brenda says she had been battling something forever prior to her diagnosis in 2012.
“I was very active, but still had swollen joints, knees, and fatigue.” She said because her blood work always turned up normal, there was no follow up. Something many of us have experienced. She goes on to say, “I was extremely lucky and sick when I was officially diagnosed. I walked into see my doctor who was treating me at that time in the Asthma and Allergy Department at National Jewish Health. She told me that she was also a rheumatologist, and she believed 100% that I had RA...started me on treatment that same day.”
Her younger son, Paul, began his story when he was much younger. Brenda tells me, “Paul had shown more symptoms of arthritis. He had Kawasaki's Disease when he was 2 years old. I blamed that for the swollen ankles and hands.” She says that Paul was referred to the Rheumatology Department at Children’s Hospital in Colorado. And, again, his blood work showed that nothing was wrong.
“It felt like my son was battling the same battle he did when we were battling Kawasaki's. Dead ends.”
It wasn’t until Brenda, knowing x-rays provided her diagnosis, asked for imagining that eventually showed Paul had arthritis in his lower back, hips, knees, and ankles. In March of 2019, he was diagnosed with enthesitis-related arthritis, which is another term for ankylosing spondylitis.
Her older son, Miguel, had a slightly different story
At the same time that Paul was trying to get his diagnosis, Miguel, who had been battling psoriasis from a young age, had an appointment with a dermatologist.
“Miguel told the dermatologist that he had been experiencing back pain.” Brenda continues to say, “I thought they were growing pains. Miguel is the active one. He had no inflammation of any kind, no swelling, no fatigue. He popped every joint, and asked the doctor if she thought it was normal.” The dermatologist said it wouldn’t hurt to run some blood tests since his brother was also being tested.
The blood tests, of course, were also normal and showed no signs of inflammation, however an MRI told a different story. It showed that Miguel had inflammation in both his hips. Miguel was diagnosed with AS in April 2019, only a month after his brother.
Brenda’s reaction: “Even though [the inflammation] was not as bad as Paul’s, it didn't matter. The fact that now BOTH my sons had an autoimmune [condition] crushed me. Pushing through any inflammatory disease is no walk in the park. It's something that I never wish anyone, not even my worst enemy.”
Reacting to a diagnosis
Brenda, who knows what it is like to live with RA, was just told in the period of one month that both her sons were now going to be living with similar conditions.
I asked Brenda how she handled getting this news.
“Handling it for me was the hardest. It's not what any parent wants their child to battle. In the back of my mind, I beat myself up. Especially for Miguel being diagnosed. The symptoms have been there, and I brushed them off because I didn't realize that they were all actual symptoms of an autoimmune [condition].” She continues, “With Paul, I knew deep down something was wrong. So, handling the diagnosis was more a relief of finally getting an answer, versus Miguel who was more of a shock and disbelief.”
She says, for her sons, it gave them a better understanding of what she had been going through with RA.
“I love the way they boys handled their diagnosis and even mine. They were supportive and started helping me more.”
I wanted to know how both Paul and Miguel reacted to learning of their AS.
Paul was diagnosed when he was 10 years old. He says “I didn't think much about it at that time...Didn't think it would impact me or change me. Until I flared again and I realized, ‘Oh yeah. This is going to be a battle.’ I'm still learning.” But, he says he is ready for a fight. “I don't like it because I have a lot of damage, I can't do the same sports as Miguel because of the damage. But, I will defeat it. BRING IT ON AS!"
Miguel, already seeing how his mom lived with RA, compared his story to hers.
“I didn't think much about it, it didn't really bother me. You (mom) had it first, so I've seen you push through it. I guess, it changed me when I started taking medications that you took, and seeing the side effects. I wanted the best treatment available to me. I know I'm young, but it made me ask myself about my future. How will it affect me, physically? Would I be able to join the military? Have kids? Be active? So, I asked questions and looked up and read stuff. I got this.”
Bring it on! I got this!
I loved these closing statements from Paul and Miguel. They are both fighters along with their mother.
In Part 2 of this series, Brenda shares more about what it is like to be a parent with arthritis while caring for two boys with a similar condition. How all three of them get through the day while helping each other, and, where they find support.
Please continue reading the great articles on AnkylosingSpondylitis.net and stay tuned for part 2 of “Like Mother, Like Sons.”
Do you use the word disability to describe your AS?