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Pediatric Sjogren's

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Story

Hi, I'm Grace. 

Yeah, I know. I don't look sick. The truth is, I am.   

I was diagnosed with Pediatric Sjogren’s when I was 9 years old. Pediatric Sjogren’s Syndrome is a rare, serious, systemic, chronic and incurable autoimmune disease that affects the entire body. Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies, and lymphomas. I live with all of them except lymphoma. That isn't something I have developed, but I worry that I may. 

Pediatric Sjogren’s controls many aspects of my life. It tells me what I can do each day. 

It decides my face will be swollen anytime it wants. Even on class picture day.  

It decides that I can't be in the sun because it triggers my illness and intensifies my symptoms. 

It decides when I will experience crippling fatigue and debilitating joint pain so that I can't get out of bed to join my friends at school, at a sleepover, at the mall, on a class hike or field trip, or at a party.  

It decides to tell my nervous system to send shooting pains into my hands, my feet and other areas of my body, to cut off the circulation to them or to make them go numb.

It decides it wants to attack my central nervous system and make it hard for me to concentrate or think.  

It decides to attack my moisture-producing glands so that I have trouble swallowing, eating or digesting.

It decides to make my eyes so dry they hurt and feel like I have sand in them. 

It decides to make my eyes spontaneously produce tears for no good reason. Yeah, that one is new. Try explaining this one to your friends? No, I'm not sad. My eyes just do this! 

It decides to beat up on my kidneys.

It decides that I should spike a fever.

It decides if I will sleep comfortably, or be up all night.  

It decides that I spend my time in and out of doctor appointments, labs, hospitals, and taking medications.  

Pediatric Sjogren's decides a lot for me.  

However, I decide whether I sit back and hope for others to find the answers or whether I take an active role in finding a cure. I think you know what I choose. 

Will you help me?

Together we will: 

- Continue connecting families with resources. Our Pediatric Sjogren's Support Group has grown to 70 families around the globe. 

- Finalize the Pediatric Resource Page on the Sjogren's Syndrome Foundations Website. Here newly diagnosed families can learn about the disease, how to establish a plan for school accommodations, find out how to manage symptoms, and where to go for help.  

- Continue our work with the Sjogren's Syndrome Foundation and the Childhood Rheumatology Research Alliance (CARRA) to develop the diagnosis criteria and algorithm for pediatric Sjogren’s, publish research, and build a registry of pediatric Sjogren's patients around the world. 

- Continue to spread awareness and educate patients and physicians so kids like me get diagnosed earlier. 

You can make a difference and bring hope to kids and families living with pediatric Sjogren’s.

Donate online, form a Fundraising Team, or Join us April 27th at our event! 

THANK YOU!

#painisrealsoishope #pediatricsjogrens #thisissjogrens #sjokids


*****The Sjogren's Syndrome Foundation (SSF) is a  501c. The Foundation has received the Independent Charities of America Seal of Excellence. This is awarded to the members of Independent Charities of America that have, upon rigorous independent review, been able to certify, document, and demonstrate on an annual basis that they meet the highest standards of public accountability, program effectiveness, and cost effectiveness.  They are a small and might organization!  ****** 

Posted by Sharon Tiger