I wanted to hold him out and say, ‘Somebody, please, just help him.’
Lisa Moreno-Dickinson may not have made Forbes’ list of the world’s most powerful people this year. But that is not going to stop her from changing the world for children who suffer unbearable pain from childhood autoinflammatory diseases (CAID). Nothing can stop her—at least not for long.
Moreno-Dickinson formed Stop CAID Now several years ago to educate, build awareness, and fund research. Since then she has: forged a partnership with Cleveland Clinic to create the first evaluation center for CAID; helped get a CME created; founded StopCAIDnowInternational; started an anti-bullying campaign; wrote a children’s book called The Hero in Me; sent “hero awards” all over the world to children with CAID; and created a perfume fragrance, La Fin Du CAID, to support research.
Like many mothers of children with rare diseases, her journey began with RARE symptoms that she had to struggle for 19.5 months to diagnosis.
Seeking a Diagnosis
Moreno-Dickinson knew something was wrong from the time her son, Brody, was an infant. But she didn’t know what was wrong. “Brody was in such pain that I literally got an hour of sleep. It took 19.5 months to diagnose him. If I heard 1 more diagnosis of reflux it would have been comical without being funny. From working with children for years I knew what real illness was and what the common cold and reflux was; this was different and I needed a doctor who thought outside the box.”
It wasn’t until Brody was 6-months-old and had a bronchoscope revealing noncaseating granulomas that doctors had the first clue. “It was so rare that they had a meeting on it and confirmed it. Then they did a laparoscope and found more of them in his body and organs.”
“I was calling every hospital, every doctor, getting little bits and bits of information.” Finally a Google search led her to Dr. Spaulding at Cleveland Clinic “He looked at me and said, ‘I thought this was going to be a hard diagnosis.’”
He was able to make the diagnosis of atypical Blau syndrome with the symptoms, a genetic work up from NIH, and biopsies. “We talked about treatment, and how we were going to start. It’s trial and error. I had the diagnosis that led us on a trail to different treatment, but still not my answer.”
Creating Stop CAID Now
Treating was not the only option, as far as Moreno-Dickinson was concerned—she wanted the cure. “I couldn’t believe there was no foundation at that time that collectively covered autoinflammatory diseases and provided a ‘home’ for all people with what is now called CAID, a term I coined. When I told Dr. Spaulding I wanted to start an organization, he said ‘Lisa that’s really taking on a lot, I don’t know if you can do it, but if anyone can it will be you.’ I got my 501c(3) within a year. I pushed hard.”
“After Brody was diagnosed, I was going to go back to my career in criminal law. But when I looked at Brody and knew he was taking over an adult dose of an off-label drug at the time, and he was still in daily pain, with no known prognosis, I knew I couldn’t do that. I even remember being at the hospital and having the nurses and doctors say, ‘I’ve never seen a baby in such pain.’ That was when I realized I’m in this alone. I wanted to hold him out and say, ‘Somebody, please, just help him.’ His first word was ‘boo boo’ I knew he was in such pain, but he couldn’t tell me where the pain was stemming from.”
Because she has been taking steroids for 27 years for her autoimmune disorders which cause chronic pain, Moreno-Dickinson knew what it was like for her son on some level. “I get the pain they go through. I’ve learned to displace it as an adult. If I was a child, I couldn’t handle it, but the pain is REAL.” Brody’s genetics ironically did not come from Lisa and she doesn’t have a CAID, but knew she couldn’t drop the ball on any child especially her own.
What’s in a Name?
Moreno-Dickinson decided to group together 30 autoinflammatory diseases under 1 umbrella because she felt that it was inflammation that was doing the damage. “If we focus on the MOA (mechanism of action) we can help thousands and thousands of people.”
Her older son, Aidan, also suffers from chronic pain so severe that he sometimes needs to use a walker. “People have dropped the ball on him,” she says. “No one has diagnosed him yet. But with the CAID cure, he will be helped.”
“The hardest thing is that you are heroes to these kids. To look at their faces, knowing that they feel no hope and doctors can’t help them or just drop the ball, it just breaks their hearts and mine. I had a song that a rap/hip hop star made for the kids called Fly for CAID that talks about the reality of what families go through. It’s not your ‘wheels on the bus’ kind of song. One of the mothers told me that when her child heard it she said, ‘They finally get it.’”
Working with Cleveland Clinic
The partnership with Cleveland Clinic came about because Moreno-Dickinson told Dr. Spaulding that she wanted to create a ‘home’ for autoinflammatory diseases and he introduced her to financial directors at the clinic. Now they have the first evaluation center for CAID, but that’s just the first step. “I’m talking to investors because I want the actual brick-and-mortar building.”
“I wanted to give back to Cleveland Clinic because they didn’t drop the ball and also because I needed a ‘home’ that could also help adults when the children became 18 years of age. The money I raise goes there and to Georgetown, which does research for the CURE on autoinflammatory diseases. The 2 processes I’m focused on are the cure and the home.”
Giving New Meaning to the Term ‘Empowered Patient’
Moreno-Dickinson isn’t just empowered. She’s super-empowered, something even her sons have noticed about her. “One day when we were at the hospital, the nurses were like, ‘Are you a doctor?’ and the boys said, ‘well kinda.’ The 1 thing my boys know is I won’t give up. They know what I am doing and why. The families, my boys, and the children can live without worrying because I am a woman of my word and working with doctors who will get us there—we will see a CURE.”
When asked if she had a medical background, she said, “Actually, a lot of my expertise is just common sense based on science and the knowledge I’ve gained through my own reading and research. When the nurse was checking us in 1 time, I noticed that I had an asterisk by my name. I asked her what it meant and the nurse said it means, ‘Very educated mom.’ I smiled knowing that was their warning…all jokes aside I am grateful when doctors and nurses want to take time to educate themselves. These are RARE Diseases and autoinflammatory diseases are relatively new since about 1999.”
“I have such respect for doctors but I also feel that having your degree just allows you to have a foundation of knowledge. Medicine changes daily. If you can’t think outside the box it’s going to hinder your ability to help the rare disease community.”
Getting Back to Work
The 1 thing Moreno-Dickinson is not about to do is rest on her laurels. She was notified recently that she would be receiving the ‘Heroes Among Us’ community award from the Philadelphia 76ers at a Monday night game. “On Sunday both boys were admitted to the hospital. After they were discharged I took them home, got Brody settled by 2 in the morning, took the trash out and went to bed.”
She is also not going to let the rare diseases her sons have, or her own chronic pain, keep them from enjoying all of the good things in life. “We get up, we dance, and we live. I am one of the most optimistic people you will ever know.”
- 15 November 2013 at 2:11pm
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[...] with rare disorder communities, I’ve met many inspiring caregivers. The most recent example is Lisa Moreno-Dickinson. We interviewed her ...