May is Arthritis Awareness Month – Don’t be Sly

Arthritis Awareness MonthLast week, I read an article where Sylvester Stallone was quoted poking fun of his fellow aging actors in the Expendables at a premier in Cannes. “We are like children…with arthritis,” Sly joked.

Some may have laughed. Maybe I would have laughed two years ago, oblivious to the issue. But I didn’t this time. And there are 300,000 children in the U.S. who didn’t laugh. Why? Because they are children with arthritis.

Sly, we know you didn’t mean to personally offend them, but I’m selfishly using the example to make sure it doesn’t happen again. Last year, I became a parent of a child with this chronic, lifelong, painful scary disease. My child’s life changed, and so did mine. We’re not asking for a big pity party. In fact we’re pretty darn strong, happy and thankful for our health on good days. But I hold out hope that being educated about this will help people understand what “children with arthritis” go through and empower more to help the fight for a cure.

And I hope that readers can join and support us on Sunday, June 1, at the 10th Annual Walk to Cure Arthritis in Verona Park, NJ.

First, Some Facts

Did you know that May is declared Arthritis Awareness Month? Maybe people know that almost 52 million adults have arthritis, the leading cause of disability in America. But most people don’t know that 300,000 children in the U.S suffer from the autoimmune diseases of Juvenile Idiopathic Arthritis (JIA). Autoimmune diseases cause the body’s immune system to attack an otherwise healthy body. There are several categories of JIA:  Oligoarthritis which attacks 1-2 joints at a time; Polyarticular that attacks 5 or more joints at once;  Spondlyoarthritis that attacks the spine and attaching cartilage across joints; Psoriatic arthritis that attacks joints as well as causes skin inflammation;  and Systemic JIA which attacks the internal systems of the body as well. The pain can range from mild to extremely debilitating and life threatening. Children suffer flares, fevers, pain, rashes, psoriasis, like their adult counterparts, and some go on to suffer into adulthood. Some have found that natural remedies and dietary changes can help lessen inflammation over time, but many have not – and as children grow and their joints are permanently damaged, it impacts the mobility in their hips, knees, elbows, fingers, back, and even jaws. Many of these children are also at risk for uveitis in their eyes, which can cause blindness if not treated early enough.

What Medications Exist?

To combat the risk of joint damage and uveitis, stronger drugs are prescribed to prevent long-term damage. The therapies provided move from oral drugs like NSAIDs (non-steroidal anti-inflammatory drugs like naproxen or Aleve), to lesser versions of chemotherapy treatment (methotrexate), and what are called ‘biologics’ such as Enbrel, Humira, Remicade – given as injections at home, or infusions, and are often prescribed for years on end. On the plus side, these medications (albeit extremely costly) have enabled an age where children live relatively normal lives. These children would be in wheelchairs 25 years ago, unable to walk with swollen and damaged joints. On the negative side, these biologic drugs are immunosuppressive, which means they halt the immune system’s ability to produce inflammation or fight off infections, sinus, strep, and urinary tract infections commonly occur, requiring more antibiotic therapy. Liver issues can occur, and some deaths have resulted.  Sometimes these therapies do not work or children’s bodies build resistance over time – so the drugs are changed out in an almost experimental fashion.

So Much More Work Needs to be Done:

  •  Not enough doctors exist to support these children: for this disease, pediatric rheumatologists are the specialists in the field – there are 250 nationwide, many clustered near urban areas, leaving 11 states that have none.  Families across the U.S. often wait months for an appointment and can be misdiagnosed for years prior. Often a team of specialists are consulted and involved in the child’s care, including immunologists, allergists, gastroenterologists, and opthamologists. Many parents must plan far in advance and take significant time off for work to drive often long distances for these specialist appointments.
  • Not enough attention is on the costs of medication and care :  for many families across the country, especially those families with lower incomes, the medication and care needed for their children is beyond affordable.  Each injection of biologics can cost $500-$3000 and although subsidized by health insurance and coverage programs, these are medications that are taken for years – and approvals, authorizations, and insurance rules for what therapies must be tested prior to these meds may be prohibiting the right care taking place.
  •  Not enough research has been done: many pharmaceutical companies aren’t often incented to study their medications extensively on a small group of children, leaving rheumatologists to try out various medications to relieve the most symptoms.  The medications must be made safer and less risky to children. More studies are needed to understand the genetic profiles of these children and why some medications will and won’t work, and so much could be saved when the best therapy is started immediately.
  •  Not enough awareness exists: It is a silent disease – we as parents hear phrases of ‘but he looks totally normal’ and ‘it could be a lot worse’. But for our children, life is anything but normal when your child is too fatigued to get out of bed, when it hurts too much to walk down the stairs, and when they try to muster energy and stamina to smile, play in the sports and gym class that others can easily do. We as parents want the best for them, and give them a chance to thrive – and for that, we will knock down walls, advocate for them, push for better research and studies, and drive for new medications to bring them to remission and avoid joint damage in their lives.

So…What Can You Do?

If you’ve read this far — you’ve done a lot already! Your understanding of the disease and what these children, adults and families go through is priceless. And we thank you!

Walk to Cure Arthritis

If you want to take another step, you can walk with us this weekend on June 1, or support one of the teams walking in the Walk to Cure Arthritis, in Verona Park:

  1. Click this link to Learn more, Register and Walk:
  2. Click this link to donate and join our team walking
  3. And if you want to get even more active – you can become an  e-advocate to write to Congress to approve budgets for additional research, accommodations for children and adults.  The Arthritis Foundation has done an amazing job at advocating and supporting the patients and families of this disease.

 

Amy Goring is a Maplewood mom and HealthIT consultant who blogs about her son Finn and Juvenile Arthritis. 

 

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