Debbie, with Rheumatoid Arthritis writes:

I wish WE The PEOPLE could get help with funding for meds, Research, and disability for those of us who can't work. The system we have now does not work for All the people.

If I sound bitter, it's because I have been turned down for SSI four times and I'm still fighting for it. I just wish Rheumatoid Arthritis would be recognized as a disease that needs national attention so that we can work together for a cure.

Georgia Sinnard, whose daughter has Juvenile Rheumatoid Arthritis writes:

My daughter was diagnosed with juvenile arthritis at the age of 13 (2 years ago). I read "Raising a Child with Arthritis", tons of pamphlets from the Arthritis Foundation just to try to understand more about arthritis--and it is difficult. We watch her go through a lot of physical pain and emotional pain. She needed a lot of counseling/treatment from various physicians and health care workers. What I have found so very very much absent is an understanding from teachers, other parents and friends as well as some health care workers. I so much wish that juvenile arthritis could get the same media attention as juvenile diabetes. My daughter has a friend who was diagnosed with juvenile diabetes the same year. Those little blurbs on TV helps teenagers so much!! Adolescence is such an awkward time and experiencing such a change is devastating--I wish more could be done about it nationally as well as locally. The teenagers experience such a change with this possibly having to drop things they love, competitive sports, dance, music lessons, etc. and when this occurs, often times it includes a loss of friends because they don't understand and it seems many teachers don't either.

I was so happy my daughter found Creaky Joints--that helps her through a tremendous amount of pain and grief. I wish there were more on a local level as well. Our local chapter has a jingle bell run in the fall and a pizza/swim party in March during JAAW, but teenagers don't participate, they seem to be hard to reach and prefer to hide in the closet, when they really need a pal.

The media needs to pick up on this and help. The Today Show a couple of weeks ago did a small interview with Dr. Joyce Brothers and Katie Couric during which they discussed briefly what people need who have illnesses such as diabetes, arthritis, etc. I wish the Today Show, Rosie, GMA, Oprah, etc. would take off with these issues to educate us that it is not only a disease that can affect older people.

I have written the Today Show asking them to pick up on this issue. I wish they would go in-depth during the Juvenile Arthritis Awareness Week coming up in March and do a strong series on it. I only received a blanket response that they received my e-mail.

If many of us would e-mail or write these shows, perhaps we could be more successful.

I am going to attend our local chapter's JAAW meeting this week to try to help find remedies to reach other teens or at least get ideas. I would welcome your suggestions.

Thank you so much. Georgia

Carly Ennis, with Juvenile Arthritis writes:

I am fourteen now and I first got arthritis when I was eleven. One of the hardest things to come to terms with is the loss of freedom. The realisation that because of the disease you may never be able to run or even walk properly again unless there is some legitimate and hard reseach into what causes and possibly cures arthritis if it is possible. I believe that there should be funding into an education programme to spread around the oh-too-often overlooked facts about arthritis and its many sufferers.

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