There is Still - "NO CURE",... for "JUVENILE AUTO-IMMUNE ARTHRITIS" (Also known under many types such as,... Juvenile Idiopathic Arthritis, Systemic, Lupus, Psoriatic Arthritis, etc..... ) and with some types/children, the disease not only attacks their Joints, Bones, Muscles, Kidneys, Hearts, Lungs, etc,.... it also attacks their EYES as well,....known as "Uveitis". There are currently, Only Medicines to help "Slow" the joint damage, growth problems, sight problems, including blindness, skin, scalp & nail disorders, fatigue, pain, and emotional problems, including how they can seem-look "normal",... and people not knowing how they are suffering from this horrible disease. We need to find a cure!
Thank you to Everyone who helps raise awareness for Bailey & the 300,000 children,... "living" with any type of this horrible auto immune disease. These children didn't ask for this life that they were given,.... They just have to live it, - the best they can - With our help - And with God's Hand.
We SO MUCH appreciate the Doctors, (Pediatricians, Ped. Rheumatologists, Eye Specialist, etc...) Nurses, Dentists, Theapists, Lakeshore Staff who help keep her moving, and all.. who help with JIA & Uveitis!

Two of the Medicines Bailey has been on for 6 years now is Methotrexate (Chemotherapy drug-used at a smaller dose than cancer patients) We have to give her an injection of this medicine each week at home. Also, her Remicade IV Treatments are a Biologic Medicine made with a mouse protein and are extremely expensive. (The latest insurance EOB is billed at over $15,000.00 Each Treatment!!!) --No wonder Insurance Companies are trying to make these kids people try Cheaper drugs first,... Dangerously letting their disease Progress!!!!) So even WITH Blue Cross, or other expensive health insurance, this leaves a huge burden for families.
AND - of course, the Organiations who work "Daily" to "Raise Awareness, Funds and Research" to help find treatments, better medicines,... and strive for a CURE! Such as "The Arthritis National Research Foundation" in Long Beach CA, "The Arthritis Foundation", The EYE/UVEITIS Research Groups, The Many Many Various groups and people who help ad have helped spread the word & Baileys Video & Message, to raise awareness,.... and Of COURSE - The SPONSORS & SUPPORTERS of Juv Arth Research!!!! You may think your voice is small,.... but it is HUGE to families like us! Thank you for Speaking Out & Speaking Up!

NOW: The "Must See Video" & Other Videos & Links are below to the right, under "VIDEOS & Links"!

Friday, June 26, 2009

THE 3 MINUTE VIDEO-Also on "You Tube" ( Hit Play & make sure your volume is up! ****** Also, Remember - there are lots more pages at the bottom!)



New From The Arthritis National Research Foundation -




NEW SLIDESHOW OF EYE APPT & TREATMENT THIS WEEK:

Click to play this Smilebox slideshow: Eye Appt & Treatment
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2 comments:

Hannah said...

This is Hannah Bevills, I am an editor with Hospital.com. We are a medical publication whose focus is geared towards promoting awareness on hospitals, including information, news, and reviews on them. Given the relevance of what you are offering from your site and what our mission is, I feel we may be able to collaborate in some way or another, I look forward to your response regarding the matter. Thanks!

Hannah Bevills
hannah.bevills@gmail.com
Hospital.com

laylamommy28 said...

Hi Kim
My 18month old daughter Dalayla was recently diagnosis with pauciartiular junior rheumatoid arthritis. We went through the exact thing with her right knee the doctor drawn labs,mri, drain fuild from her knee and etc. It was so scary we stay in childrens hospital for a week and we went home with a central line in her chest and we gave her iv antibodics for a week and a half until her labs came back with jra. She went from walking to crawling again we are now doing phyical therapy twice a week. We will get her eyes check next week but your blog is very helpful because this is all new to my family

Thanks Kristina
Louisiana