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Systemic Jia Foundation

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Community Stories

17 Stories from Volunteers, Donors & Supporters

General Member of the Public

Rating: 5

My son was diagnosed with SoJIA in Oct 2018, and at that time, we had no clue about this disease and how this could change our lives. Least did we know how complicated things could get if not treated aggressively at the early stages. This forum helped us tremendously in understanding the medications available in the market for curing this disease and to discuss them with our rheumatologist. We Had lots of questions and they were seldom clarified by the parents in the SJIA group, based on their own experience.. And there are always some positive comments which help us feel better during the difficult times. And not to mention this is such an active group and parents promptly volunteering with their valuable suggestions.. a big thank u to all the members and participants and a special thanks to the ppl behind starting such a forum.

1

General Member of the Public

Rating: 5

Our daughter was diagnosed last November 2018 with Sojia Mas. We were lost. Told it's so rare and no one will know what Systemic JIA is, let alone find someone else like you. Until the Systemic jia community opened there arms and helped guide us thru the hardest times of our lives. Learning about what to watch for. Be able to ask questions. It comes down to supporting one another. Our new community.
We attended the Systemic Jia Foundation conference in 2019. The leading Rheumatologists in Systemic jia attended. Learning about Sjia from the experts. Being part of the research study to help find a CURE! The abundance of information. Being around parents like us and showing our Sjia warrior that she is not alone in this fight was so rewarding! The connections we made are life changing! All set up by the Systemic JIA Foundation!
We can not thank the Systemic JIA Foundation enough!
Happy to say we have a 1 year survivor who is thriving!

2

Client Served

Rating: 5

This group is educational, accurate, professional, current, supportive, and most of all CARING — made up of real parents and supporters of real children with a very serious disease. It’s an invaluable resource to bring light to a confusing and scary topic; spreading hope and support by connecting doctors and families.

2

General Member of the Public

Rating: 5

My son was diagnosed at age 15 with SJIA after three months of unexplained fevers and elevated lab markers. There were no rashes, swollen joints or any of the usual symptoms of SJIA. Finally, a swollen elbow allowed for diagnosis of SJIA and MAS, treatment and medicated remission, except for 3 flares during the past five years. We attended a SJIA conference in DC a few years back and learned of the FB support group with many dedicated members, including Rashmi Sinha, who, with her husband, started the Systemic JIA Foundation. The support provided by the members and Rashmi is immeasurable, especially for parents who are seeking advice to help their children navigate this disease. Rashmi attends meetings and conferences and reports recent advances back to parents unable to attend. She will also advise parents who to contact for certain aspects of the disease. Rashmi and so many others give of themselves to help others, providing much needed support to many families. While it is heartbreaking to read what is happening to so many children, I appreciate being able to learn about the many varying aspects of SJIA, as it is so important to stay informed. Thank you, Systemic JIA Foundation, for your services. It is truly appreciated. - Carol Wilson

2

Client Served

Rating: 5

My family is very grateful for the Systemic JIA foundation’s work. The foundation provides excellent support for patients and their families and is an incredible resource for up to date and reliable information related to current research. One of my family members was diagnosed with systemic juvenile idiopathic arthritis in 2015. She struggled with management of her condition due to lack of availability or limited medication and a large misunderstanding of the disease. The foundation’s tireless efforts to gain information and adept awareness of refractory complex sJIA case (such as macrophage activation syndrome (MAS) and lung disease (LD)) truly helped her and made a big difference in her lung diagnosis. The Forum is a group of parents and caregivers available at any time to help and sharing experiences with others on their journey. The Forum has been a huge factor towards helping my family build stronger resiliency. If anyone is interested in learning more about the systemic JIA, I recommend watching the systemic JIA foundation videos available on YouTube. As a small non-profit, they do a tremendous job of spreading awareness about systemic JIA and as a result have reached many people to educate them about the signs and symptoms of this condition all over the world. I would encourage anyone seeking to donate to a cause to choose this one. By donating to this cause, you will help save medically fragile children’s lives. To think about it, donating to the systemic JIA foundation in not just a choice, it is saving a life.

2 Patricia R.5

Donor

Rating: 5

I learned about SJIA foundation after my granddaughter was diagnosed with SJIA. This foundation does a great service in helping further research in SJIA, rare disease that is not well known. I support SJIA in the hopes that someday individuals will not have to go through the ordeal and pain that my granddaughter lives with every day .

2

Client Served

Rating: 5

Our daughter was diagnosed with Systemic JIA in 2016. It has been amazing to know that we are not alone. The Systemic JIA Foundation is such a great resource for information and they have even assisted us when we've had issues with our insurance/pharmacy. They've always had our backs!

2 Shira Margulies Z.

Client Served

Rating: 5

This past spring, our two-year-old started getting daily fevers of 104+ and a funny pink rash that moved all around her trunk. She was dismissed by the ER as having a virus and it took seven weeks of daily fever and symptoms before we received a working diagnosis of SJIA. I felt so alone and scared, and I googled desperately for information and for stories from parents of other kids with this disease. The day I found the SJIA Foundation Facebook group, I breathed a sigh of relief. The support and education this group has provided for families dealing with SJIA has made me feel like we’re not alone and like this is something we can handle and deal with. I am so grateful the SJIA Foundation exists and for the work that it does to help our kids get the care they need!

3

Client Served

Rating: 5

Sjia foundation has played very important role In our life. This helped us not just to choose right doctors and right treatment, it educated us very well during complex situations. We have been attending their annual conference, I felt that was very education and got a great chance to meet other families who are going through same situation. Our doctors at chop Philadelphia are amazing in treating this ultra rare situations, and I could get reference from this foundation. Whenever we feel failed we have many parents from this foundation who will help us and guide at midnight. Thank you very much SJIA foundation!!!

2

Client Served

Rating: 5

My daughter is a teenager with SJIA. I felt very alone helping her fight this illness until I met others within the group and ultimately the SJIA Foundation. Through the Foundation I was able to attend a Next Gen conference in DC where I met so many people with a passion for SJIA and all there is to learn to help our kids. Doctors, parents, researchers, pharmaceuticals all in one room with one goal: how to help our kids with SJIA!
This led to our family traveling to Cincinnati Children's hospital for rheumatology and pulmonology treatment and my daughter has never done better in her fight against this disease.
The community and friendships being made for support are only secondary to the priority of finding a cure!

2 Andrew D.2

Client Served

Rating: 5

This foundation has opened our eyes to a wider community of people dealing with the same problems my family deals with on a day to day basis. We attended the conference organized by this foundation in 2019 and were given hope that we are not fighting this battle alone. There are no ways to measure what this foundation means to our family. Thank You.

1

Client Served

Rating: 5

Our son, Evan became very, very Ill in August 2015. He was 10 years old. After MANY ER visits and three inpatient stays he was diagnosed with SJIA. His symptoms were terrifying! The third hospital stay upon admission the pediatrician came clipping down the hall quickly after seeing Big E's lab results. The doctor suspected HLH or MAS, both can be lethal.
I began searching the internet for information. There wasn't much out there. I then searched Facebook- search word (MAS.) This led me to a momma blogger. I recognized that rash, the fevers, the terrifying labs and messaged Emma. Emma responded immediately fearing E was in Macrophage Activation Syndrome. I had an ally from then on. Emma then introduced me to the SJIA Community. Evan had subclinical MAS twice in a year. Advocates took me under their wing. I was so afraid that I felt paralyzed. I was in denial. We searched frantically more than 5 opinions! The Systemic JIA Foundation held their first ever family education day at Cincinatti Childrens Hospital. Our friends and family surprised us with support to make this trip. Since SJIA is rare education is crucial to try to keep our kids safe. Since our first meeting with the foundation we have had more opportunities to support research and advocate for awareness. It means the world to us that the Foundation is always ready to do life saving advocacy. They will fight for us!!!! I'm honored to be part of this community and take part in any opportunities to further their mission. They save lives.
Cure SJIA
#TheBigEThatCould has a much better quality of life after starting a biologic called Ilaris. He requires chemo shots every week. He is stable but has not reached remission.

Thank you from the bottom of our hearts. ❤
Tammy and Corey Woodwick

3

Client Served

Rating: 5

The SJIA Foundation has without a doubt saved my daughter's life. They are truly committed to their mission and work to help educate and serve the SJIA community. When my daughter was diagnosed with the life threatening complication MAS in June 2019 they worked quickly to get me valuable information and to put me in touch with doctors in Cincinnati who ultimately saved her life. Their annual conference educates and networks parents and doctors from around the world. The Next Gen Conference hosted by the SJIA Foundation works to create awareness of patient needs and helps connect the dots between patients, doctors, FDA and pharmaceutical companies to hopefully find a cure for our children. We are grateful for all that they do! ❤️

1

General Member of the Public

Rating: 5

we were diagnosed in 2016 with sjia We felt so alone in this awful journey of no answers. We found this group and We went to the 2019 sjia conference in Cincinnati. While attending this conference we also had a second opinion appointment. Since then we have been diagnosed with ld and pap. Through this group and going to conference We met some amazing drs and parents all with one goal to cure sjia. it’s really sweet and amazing that one trip could really change our lives completely as we are going on our second trip to Cincinnati. The gratitude I have for this group is so big it’s hard to find the exact words!!

2

Client Served

Rating: 5

There’s no words to express my gratitude towards this foundation. My daughter was diagnosed May 2018, and the through our journey, the foundation was able to help us get a second opinion in Cincinnati. The SJIA yearly conference was a great way to meet others like my daughter, and learn much more regarding this disease, and what brilliant doctors are doing to help, including future therapies. My daughter was also diagnosed with MAS in the liver this year, and again, this foundation was able to guide me through such a difficult and rare condition. Our journey is not over, but I know we are not alone fighting this horrific disease.

2 Sara Fuller B.

Client Served

Rating: 5

I discovered the Systemic JIA foundation after my daughter received an SJIA diagnosis in 2019. One of the immediate benefits that was hugely impactful for us was the parent/caregiver forum the Foundation supports. Immediately, we were surrounded with a wealth of caring and knowledgeable real-time support to guide us through the initial steps of beginning treatment and dealing with school and social obstacles. After our initial frenzy, the Foundation has now become our go-to resource for the latest in medical treatment, clinical trials, and advocacy opportunities. The annual conference is giving a loud voice to our children within the Rheumatologic medical community, which will also impact the lives of thousands of kids to be diagnosed in the future. This Foundation's work has a remarkably wide scope of support for SJIA, all of which is executed brilliantly.

2

Donor

Rating: 5

The Systemic JIA foundation has a great team working towards finding a cure for kids suffering from this deadly disease. I joined the group on Facebook after my son was diagnosed with SJIA with MAS in October 2018. To be honest I have learnt a lot from this group and they are always there to clear your doubts and give you the confidence to handle the situation the rt way. Their yearly conference definitely works towards educating parents about the disease and it’s complications and also doctors toward the latest treatment options.