Autoimmune disease is spreading among children in every industrialized nation at alarming rates. Almost every disease (including Sjögren’s Syndrome), has exploded in its growth. Here are just some of the crazy statistics:

  • Autoimmune disease is one of the top 10 causes of death for kids aged 1-14 and one of the top 8 causes of death in children and young adults aged 15-24.  (American Autoimmune Related Disease Association).
  • Inflammatory Bowl Disease is increasing in children. A 12-year study showed the incidence rate doubling. There are 800,00 children in the US with IBD.
  • The number of children and adolescents with Type 2 Diabetes (most of whom are diagnosed in their early teens) has skyrocketed within the last 20 years, prompting the journal Diabetes Care to call it an “emerging epidemic.” The American Diabetes Association reported a 23 percent rise in Type 1 Diabetes over an eight-year period that ended in 2009.
  • Celiac Disease affects 1% of the population and is is more than four times as common as it was 50 years ago, according to research, which was published in the journal Gastroenterology.
  • 1.5 million Americans or 5 million people worldwide have Lupus. There are 16,000 new cases per year, based on best estimates and available data.

Now, lets talk about Sjögren’s Syndrome. With upwards of 4,000,000 Americans suffering from Sjögren’s, it is one of the most prevalent of the autoimmune illnesses. It’s also one you might not be familiar with. Nine out of 10 patients are women. About half of the time Sjögren’s occurs alone, and the other half it occurs in the presence of another autoimmune connective tissue disease such as rheumatoid arthritis, lupus, or scleroderma.

This disorder can affect individuals of any age, but it is most common in elderly people (prevalence of about 3% above the age of 50 years). But it also affects children.

And Grace is one of them. Many of our kids who might have Crohn’s or Celiac or Colitis, might struggle stepping forward to help raise awareness around their disease. After all, as Grace says, who wants to be known as the “girl with Sjögren’s?” But, Grace worked through it and found the courage to not only help raise much needed money around this horrible disease, but awareness as well. Watch her video below to hear her message:

Grace’s mom, Sharon Tiger, knows the day to day agony of raising a child with a chronic illness all too well. Many of us can relate. She shares her story with us today:

It’s difficult to describe in words the many emotions or the day to day challenges of being the parent of a child living with a chronic autoimmune disease.  Life for us was forever changed when our daughter was diagnosed with Sjogren’s Syndrome.  Yes, I know.  I had the same reaction.  Say that again?  How is it pronounced?  Can you spell it? And then, the next logical question, can you fix it?  The answer was no.

Initially, we felt a sense of relief at least being able to identify the bully that has been picking on our daughter and be able to call it by name – Sjogren’s Syndrome.  We even walked out of the doctor’s office feeling hopeful the severe episodes that led to the diagnosis were just ‘one-offs’ and moving forward with the prescribed disease-modifying drug would somehow return things to normal.  I suppose some would call this the denial period.  We could not have been more wrong.

Then there is the feeling of isolation.  A strange thing happens as time passes.  The silence becomes deafening.  I explain to myself that friends and family just don’t know what to say, so they say nothing.  Perhaps they think it causes us pain to talk about it.  Or maybe they tire of hearing things just aren’t okay.   I really don’t know.  My heart still longs to hear:  We are sorry you are going through this.  You are doing a good job.  You are doing your best.  This must be hard.  Anything kind…anything at all.  No matter how much time has passed, some spoken acknowledgement would rescue me from the deserted island we sometimes feel we are on.

Sjögren’s SyndromeAnd while all of those feelings still ebb and flow and toss and tumble us, an inner strength has emerged, rooted in the deep love and respect we have for our child.  It’s how we put on a reassuring face, whisper encouraging words, admire our little girl’s strength and determination and push for answers.

We started doing research.  We tried to ‘hack’ what may have caused this and why our child?  And still there are no answers and no solace in the research.  Gradually, we realized that there is a new normal.  And what was, will no longer be.  We mourned.  We mourned the loss of what was a carefree and energetic child.  We mourned our helplessness and the powerlessness we felt that we don’t have the answers and we can’t fix what is wrong.  We wish and wish that we could take our child’s place.  She has her whole life ahead of her.  Why can’t we take her place?  I’d gladly take my daughter’s pain so that she could return to a ‘normal’ childhood, one that wasn’t filled with medications, doctor’s appointments, waiting rooms, labs, chronic pain, fatigue, disappointments and fear.  I don’t think we will ever reach the acceptance stage.

Where are we now?  Sjogren’s is a complex disease that significantly impacts our lives.  She experiences nerve pain for months on end that would render many adults unable to function, yet she perseveres and pushes on while we continue to partner with physicians to ease it.  Our ‘normal’ now consists of a morning routine to help our daughter get of out of bed each morning.  We deploy heating pads, massage and medication to help her painful joints regain something approaching normal motion.  We talk about what she can and cannot do that day so that she can manage her pain or her crippling fatigue.  Sometimes it’s a school day.  Sometimes it’s not – often times, it’s not.  Already, four months into the school year, she has missed a month of school for illnesses or doctor’s appointments.  Remarkably, she is still an excellent student and has not fallen behind.

We encounter top physicians who admit they are just now learning about Sjogren’s and confide that the treatments they are recommending have no science or research behind them.  We, as parents, are forced to make decisions about medications with serious sides effects for which there are no long term studies.  We weigh everything and ultimately decide that we would do anything to make her more comfortable, enjoy her day-to-day and do as much of what all the other kids are doing without hesitation.  We try to remain optimistic that the medications are helping and slowing the progression of the disease and its numerous more serious complications.  Essentially, we are guessing and performing trial and error to figure out what will work.

Funny how your expectations can shift.  We now wish for her to be happy above having good health.  I continually voice my commitment to my daughter.  I won’t stop advocating and I won’t stop searching for a treatment that works or for a cure.  That’s why you see me on social media being as persistent as I am.  I owe this to her.  If I don’t fight for our little warrior, who will?

You can help Grace and the millions of other children and adults struggling with Sjogren’s, by going to Facebook and donating, sharing or liking their page. Any help you can provide is appreciated.

Join our fight!

 

A Mother’s Journey to Help Her Child With Sjögren’s Syndrome
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