sJIA

Kids get arthritis too!

There are over 300,000 kids in the United States living with some form of juvenile arthritis. These diseases can cause horrible deformities, mental health issues, and can even be fatal. This group of diseases is more prevalent than juvenile diabetes, muscular dystrophy, cystic fibrosis, and leukemia, yet it only receives a fraction of research funds ($2 million versus over $100 million for each of the previous diseases). There are 11 states without a pediatric rheumatologist and 7 with only one, meaning children are waiting to be diagnosed which decreases their chances of remission. This also means children may be seeing adult rheumatolgists, who are unfamiliar with child-specific issues and complications, or are spending a lot of money and time to travel far away to pediatric rheumys who are likely taxed due to the shortage. In the seven years I’ve been involved in advocacy with these diseases, I have seen children and adults with juvenile arthritis pass away either from infections or from complications of these diseases. I’ve lost close friends, and nearly lost others.

We need a cure.

For spoonie ladies, we all know the discomfort of jeans when tummy and joints hurt and for those with fibro anything of the wrong fabrics and such will kill. I wasted a lot of money trying to find pants that didn’t hurt. These are the ones. The Most Loved Yoga Pant from Victorias Secret come in four lengths short, regular, long and extra long. For me this is the first time I am not tripping on my pant legs due to the fact I am very short. I dress them up with fancy tops and cover the band, and wear them as kicking it clothes with tanks and hoodies.https://www.victoriassecret.com/clothing/yoga-and-leggings/the-most-loved-yoga-pant?ProductID=253098&CatalogueType=OLS

This tea soothes that sore throat so many people with rheumatoid diseases know so well. Where it feels like you need to scratch the inside of your throat. This stuff is one of my go too’s. Also good with a green tea bag. Its strong though so only let steep about a minute. https://www.bigelowtea.com/Shop-Teas/By-Type/Herbal/Orange-and-Spice-Herbal-Tea#.VZX9SEYtp8E

awards.wegohealth.com
Check out Kirsten Schultz's #HAAwards Nomination

Congratulations on your Health Activist Awards nomination Kirsten Schultz. Learn about this amazing Health Activist at https://awards.wegohealth.com/nominees/1532

Hey gang! I’ve been nominated for a couple of Wego Health Activist Awards. I’d love if you’d come endorse me - and while you’re at it, nominate someone you think is great at health activism!

After I started taking methotrexate and steroids on a daily basis, all foundation I was wearing started making my skin hurt and peel. So I switched to bare minerals and it has SPF 30 in it making it perfect for people on medications that make them sensitive to sunlight. I use color 02 Vanilla for my skin tone. Photo courtesy of http://www.bareescentuals.com/Complexion-Rescue/US74278,en_US,pd.html

Watching bball after a busy day. We went out for breakfast, went shopping, played bball, showered, went to our favorite Venezuelan place for lunch, and we’re now doing laundry. I had a really bad asthma attack after lunch and took too many hits off my inhaler so I feel crummy. My body is hurting from today, but since it’s behaved so much lately I feel silly for being frustrated with it. I’ve had a hard time eating between my PTSD episodes and #sjia/post antibiotic tummy issues.

I’m trying to be happy and for the most part I am. I’m just dealing with rough stuff right now. If I’m slower to respond, know that it has nothing to do with you ❤❤❤

spreaker.com
109: Tucker Beau After Stem Cell Therapy
Linsey Hyatt shares the struggle of her son Tucker Beau who was diagnosed with Systemic Juvenile Idiopathic Arthritis at the age of two. Prior to his diagnosis, Linsey and her husband, Todd, started to see some changes in their son. He would run extremely high temperatures, would get a rash all over his body and completely quits eating. Tucker Beau grew up with active arthritis in his hips, both knees and ankles, his elbow and both his wrists. At that time, he also developed fluid around his heart and...
medpagetoday.com
IL-1 the Culprit in Juvenile Arthritis?

Treatment with the interleukin-1 inhibitor rilonacept (Arcalyst) resulted in rapid clinical improvements in systemic juvenile idiopathic arthritis patients, supporting the emerging concept of cytokine

The striking efficacy of these cytokine inhibitors has prompted some authorities to suggest that the classification of systemic JIA should be reconsidered.

“Systemic JIA is likely best classified as an autoinflammatory disease, based upon the robust clinical response to IL-1 inhibition and the absence of known autoantibodies, autoreactive T-cells, or association with HLA genotypes,” explainedTimothy Beukelman, MD, of the University of Alabama at Birmingham, who was a co-author of the updated ACR guidelines.

The autoinflammatory syndromes include conditions such as CAPS, familial Mediterranean fever, and TNF-receptor-associated periodic syndrome, which are associated with inflammation and recurring fevers among children.

These syndromes primarily involve the innate, rather than the adaptive, immune system.

Been saying this for years

As a species, humans tends to focus on the “I’ll be happy if/when…” mindset. For us sick chicks and dudes, much of that centers around being happy once our health issues are under control. This is a dangerous mindset to have though - not only may that not make you happy, but that may never come and you’ll have wasted life and missed out on much while wishing things were different. Challenge yourself today by going out and doing something you’ve been waiting to do! Tonight I’m going to work on my #MedX application and attend my MedX class and take a look at possible schooling options! - what will you do? #rheum #spoonie #sjia #stillsdisease #juvenilearthritis #gogetit