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During the month of December, I will be partnering again with the Arthritis Foundation to help bring awareness about Juvenile Arthritis and the impact the Arthritis Foundation is making to provide resources for children overcoming this disease. I sat down with Jennifer Hasel, the community Engagement Director, to discuss events sponsored by the Arthritis Foundation as well as her personal experience fighting Arthritis.
When and where is this event being held?
On Saturday, Dec. 8, at the BOK in Downtown Tulsa. Registration begins at 7:30 am. The 5K run begins at 9 am, and the walk begins at 9:15 am. Pre-paid packets will be made available around 2 days before the event. People can register online early, and team leaders can pick up packets with tee shirts and jingle bells at a site to be announced.
How do people participate in the event?
They can register directly online at www.jbr.org/tulsa. There is a $30-$35 registration fee, which pays for the long-sleeved event tee shirt and jingle bells to put on shoes for the race/walk.
[** Update*** Although online registration is now closed, you can still register at the event.]
How can people support others who are participating if they don’t wish to participate themselves?
They can go to the above site and sign up to donate to a team or to a person or they can sign up for a team and not show up but try to raise money for the team.
For more information about the Arthritis Foundation in general, go online to www.arthritis.org
Is it true that you had JA, yourself?
Yes, however I wasn’t diagnosed with JA then since it was not recognized as such at the time. I developed chronic knee pain in both knees at the age of five.
How difficult was it for you to get a diagnosis?
The first diagnosis of osteoarthritis didn’t come until age 16. My family dismissed it as growing pains. We didn’t go to the doctor unless the problem was severe. Finally, at age 16 I went to my PCP. He immediately diagnosed it as osteoarthritis. He found bone deformities in both knees, which had resulted in rapid wearing down of the cartilage in both knees. This was what was causing the chronic pain.
What was your treatment when it was first diagnosed?
Three months of physical therapy and OTC anti-inflammatory medications.
How effective was it?
It helped the pain for a while, but the pain gradually got worse
Do you still have chronic pain today? If so, what types of treatment do you use?
Yes, the pain has never gone completely away. It has steadily worsened, and I now have chronic back pain as well. Today I take prescription anti-inflammatories and get steroid injections. I am also looking at joint replacement in both knees. My doctor tells me that my knees are severe enough now, but because I’m so young for this problem to present, it would be best if I wait as long as I can.
Jennifer, what do you believe now was the hardest part of having a chronic illness and pain at such a young age?
I believe it was the pressing fatigue that comes with having pain all the time. It was also the fact that it never went away. and it was really difficult not knowing the cause of the pain. This unknown element created a tremendous amount of fear in my child’s mind. The” not knowing why” made dealing with the pain even harder.
Where did you and your family turn for support when you were ill as a child?
At that time, we didn’t know about the Arthritis Foundation. I depended on physical therapists and my PCP. In my 30’s I did my own research. I visited chiropractors, explored natural remedies and supplements.
How do you believe having JA yourself helps you in your work with the Arthritis Foundation?
It’s a real “game-changer.” I can sympathize and understand what kids are going through, since I have gone through it, myself. I can understand the fear of the child who is hurting and doesn’t know why. It also helps me identify with parents of kids with JA. I understand the feeling of not being able to control the pain.
Can you briefly describe what resources the AF provides for kids with JA, both nationally and here in Oklahoma?
Yes, I can. On our JA website, you can find descriptions of the following programs and resources: 1. Juvenile Arthritis Power Pack – Back pack with information for both parents and child. There’s a child book and a parent book, a child’s Teddy Bear, and a heat/ice pack.
2. We have the JA National Conference yearly within the United States.
3. JA Camps
4. Family Camps
5. JA Transitions – a peer mentorship program to help kids transition from their pediatric rheumatologist to an adult one.
6. Scholarships, which kids apply for in high school
7. JA Advocacy – identifies JA ambassadors to promote awareness within the community
8. JA Days – occur locally to connect kids with JA with other kids who have JA
9. JA Support Network – Peer-led support groups for parents and kids with JA
10. Online Resources – webinars, information on medical insurance and other topics
11. Research – Child’s Arthritis and Rheumatology Research Alliance (CARRA), with the goal finding causes of rheumatological diseases, to find new therapies, and ultimately, to find a cure.
For more information on the AF’s JA programs, go online to: www.kidsgetarthritistoo.org
For information about the AF’s other programs, go to: www.arthritis.org
Jennifer, what is the goal of the “Live Your ‘Yes’ Campaign”?
The goal is to connect people who have arthritis with other people who have it in order to share their experiences and to provide a network of support.
When did this program begin and how long will it continue?
It launched on World Arthritis Day (Oct. 12, 2018) and will continue indefinitely. It essentially provides the basis of how the AF interacts from now on. It is the AF’s way of reintroducing itself to the community it serves in a transformative way that will provide both online and off-line support. It initiates online when the person seeking resources logs on to the “Live Your ‘Yes’ Campaign” site to get more information and to register with the Foundation. From that point, the staff will plug the person into the type of support he or she is looking for. This might be an offline support group in the community or an online chat line or discussion group. There’s also a physician’s chat line in which a person can get answers to medical questions from the online doctor.
What is the most beneficial factor of the “Live Your ‘Yes’ Campaign”?
It gives people with arthritis a sense of hope and the feeling that they are not alone by allowing them to share their experiences with others who are experiencing similar issues.
How can people with RA or other types of arthritis participate in this program?
Anyone who wants to participate can log onto www.liveyes.arthritis.org and set up an account with a password. The AF staff will then plug this person into the types of programs he or she is looking for. People can also sign up to become support group/network leaders or moderators.