JA Conference: A Mother's (and Daughter's) Perspective
"I so wish you had been at the JA conference!" my Minnesota friend Dana Bogema said to me the other day.
The JA Conference? Oh, right! The Arthritis Foundation's annual Juvenile Arthritis Conference, which was held in Orlando, Florida July 23-26 this year. I hate to say that I've been mostly wrapped up dealing with adult RA things, but her enthusiasm about wishing I had been there got my attention and made me want to know more about the conference and her experience at it.
Bogema, from St. Paul, MN, doesn't have arthritis herself but it certainly affects her life on a daily basis. Her daughter Manon Bellanger, 12, was diagnosed last June with polyarticular juvenile idiopathic arthritis (PJIA) but had symptoms several years before getting diagnosed. Bogema said that for years Manon complained of pain in her legs, ankles, and hands and would also sometimes have swelling in her joints. She was tested for RA but the tests came back negative. It wasn't until she injured herself biking last year and a cyst grew on her wrist (which was removed surgically) that her doctor suspected she had arthritis. Thankfully Manon's JIA is pretty stable right now, but she's currently taking several medications for it, such as methotrexate.
Not only does Bogema have a young daughter with arthritis, but her mother Priscilla Bogema, 62, has suffered from RA for many years, and most of those years without a diagnosis. Bogema said her mother was finally diagnosed with "End Stage" arthritis, after years of misdiagnosis and not receiving proper treatment, with all of her major joints damaged and eroded from the disease. After several joint replacement surgeries (hips, shoulders, hands, ankles), Priscilla is working toward regaining mobility, but it's not easy.
Wanting to learn more about the diseases affecting their family and hoping to connect with others in similar situations, Dana, Manon, Dana's young son Wolfgang, and Priscilla traveled to Orlando together to attend the JA Conference for the first time. Bogema found out about the conference from someone at the monthly JAFN meetings she attends, and when she heard that there was a scholarship available to help kids go to the conference, she applied for it immediately and was later accepted.
"So how did you like the conference?" I asked her.
"The orchestration of the sessions, the activities for the kids, the ice breakers for the moms and the dads were all so welcoming and informative," said Bogema. "I learned a lot about my perceptions and I felt truly connected with other people in my same position."
Bogema's mom, Priscilla, from the town of McGregor in northern Minnesota, also liked it and was impressed.
"She felt like she was given a transfusion of life," said Bogema. "She hadn't been on a vacation for over two decades so being able to go to Florida and spend time with the grandkids with informational sessions about the disease made her feel like it was manageable."
And Manon? Bogema said her daughter's favorite thing about the conference was meeting other kids who also live with poly JIA.
What really stood out to Bogema about the conference was learning about how many people suffer from the disease, and the realization of how "ignorance and wrong diagnoses" can prevent people from treating and managing their diseases earlier, like in her daughter and mother's cases. But she's thankful to learn that there are a variety of treatment options available for those with arthritis.
Another memorable part of the conference was seeing the positive ways it affected both Bogema's mother and daughter. "My mom has been so isolated in her world and this is a terrible thing for her," she explained. "But seeing other people for the first time who have crippled hands and other joints like her made her feel that she wasn't alone and that she didn't want to give up."
"I see now that my mom has so much to share and her spirit shines despite the effects of the arthritis," Bogema added. "My favorite thing was seeing both my mom and daughter's smiles each day and sharing in their excitement."
Seeing their smiles has been a lot better than seeing their pain, and being a caregiver to her daughter as well as watching her mother suffer for years hasn't been easy on Bogema. It's hard being a mother and a daughter of loved ones with arthritis.
"I feel helpless and frustrated," said Bogema. "I am so angry at times because I can't make the pain go away for either of them. At first glance they seem normal if you look at them. But then you see my mom's hands. I have been in denial about my mom for years and I'm angry I couldn't help her and I couldn't stop the disease."
"I also thought my daughter just didn't want to listen and was deliberately not combing her hair, deliberately not picking things up," Bogema added. "I didn't realize that she was in pain and the act of self-care when you are in pain is a difficult task."
Not only is attending the JA Conference good for patients, but it's good for the entire family, says Bogema. She believes it's important for the whole family to get involved, in order to better understand the disease and how it affects everyone.
"It's the best thing you can do as a family," Bogema said. "I even told my ex-husband it would be great for him to attend. It brings everyone closer and provides clarity about what we are trying to cure. The other participants' testimonials and first person accounts provide so much insight that can't be achieved otherwise."
After hearing all of this positive, affirming information about the conference, I wondered if there was anything that Bogema didn't like or thought needed improving. Not much, according to Dana, except maybe more activities provided for the siblings of kids with arthritis who don't have arthritis themselves.
"My son, who doesn't have arthritis, wanted to go outside and kick a ball and run," she explained. "He was upset that he was stuck inside for much of the conference. So, I guess a place to run and jump and play is needed for all kids!"
But overall this family's first experience at the annual JA Conference seemed to be a big success and I wouldn't be surprised if there are more JA Conferences and similar events in their future.
"Our spirits were recharged and we all feel more connected," said Bogema.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?