My JRA Heros

My JRA Heros
My JRA Heros- Jake & Hannah

Friday, April 22, 2011

Family Connections wth JRA? No- I didn't know I'd be raising two children with JRA!

1.2% chance siblings can both have JRA!
This is going to be one of those blogs that I am actually venting and sharing a few facts I was able to put my hands on recently. For those of you who know me personally, I am not a chronic complainer and try my best to stay positive.  Everyday is a struggle in some way or another raising two kids with chronic disease like Juvenile Rheumatoid Arthritis (JRA)  and living with it myself.   But when somebody asks me "why did you have children knowing they'd have JRA" or " it's a genetic disease and runs in the family". It really bothers me and hard to let go of those ignorant comments.  So this blog is just for me to be able to type out the facts I found and to justify I did not have children knowing my kids would have JRA.

Sloan Siblings both living with JRA!
When I meet someone new who learns Jake and Hannah both have Juvenile Rheumatoid Arthtritis. I expect the typical response, "didn't know kids can get arthritis" and "but they look so healthy".  Now that Jake and Hannah both wear splints everyday- there is  a visual cue for others that something is there?? Seems like we are explaining  more and more to strangers everyday that Jake & Hannah both have JRA.  Many people ask if anyone else in the family has arthritis, too?  I cringe and casually say "yes".  Several people have gone the next step and asked who in the family, so I have to share my mom and myself.  Then.... these same people automatically assume JRA is a genetic disease and it was a given my kids would have JRA.  This really upsets me....... NEVER in my life did I dream I'd be raising two kids both with JRA (Polyarticular and Systemic JRA).  It wasn't a choice Jake and Hannah had and it certainly wasn't a great risk of me having children with JRA. I have accepted it was simply God's plan for me.... Why? I don't understand that yet- but trust it was His plan despite what my chances were of having two children with JRA.

Here's what I found in a recent article from Kids Get Arthritis, Too,Volume 10,  2010 issue.  An article Linda Brown wrote on JRA: All in the Family?  We already know that there is 300,000 children with JRA.  That is one in 1,000 children under the age 16 has JRA.  A new study was done by Dr. Prahalad showed that there is a 1.2 percent greater risk of a sibling getting JRA  (when there is already one child in family with JRA).  "So there is a 98 percent chance that the family would  NOT have another child with arthritis."    As for our family, Hannah wasn't diagnosed until she was 2 1/2 years old and she was our second child.  NOBODY wanted to believe me that Jake had arthritis, too!  Yes -I was told..."No, you can't have two kids with JRA".  Well, maybe Bobby and I should have played the lottery because we have two kids with JRA.  We were not fortunate to fit  into the 98 percent who would not have another child with any type of arthritis.  
First Cousins..... Dr. Prahalad found the risk drops to six times greater than the general population.       (That would be about 1/2 percent chance that 2 first cousins would have JRA).  I'd like to say this should not be of any concern for parents and adults who are considering having children with auto-immune diseases like arthritis in their immediate family. But we are living proof- it can happen and did happen to The Sloan Family! Many parents who have a child with JRA ask me what I think about them having another child and they worry will they have another child with JRA?  Here is what researchers know as of today-- 98 percent chance that you won't have another child with arthritis! All I can say is thank goodness Bobby and I got my girl and we stopped at 2 children!! Don't think we could afford any more medical costs and mental status of me would be a scary thought!
Jake & Hannah both getting infusions at Shands Hospital.
Something we all have shared together.... SHOTS!
The article also shared that if you were found to be one of the few siblings to have JRA- that the age they develop the disease tends to be similar.  He also found if you have two siblings in a family with JRA, they more often have the same subtype of arthritis than different kinds.  I can't stand the thought that Jake complained & complained as a young child about joints hurting, asked to pray for his achy joints EVERY night and thought he hurt like his Grandpa and sister for a very, very, very long time! So I can't really say what age it all started for Jake? His diagnosis was delayed...... maybe this is why we are having a hard time controlling the disease?? EARLY AGGRESSIVE TREATMENT is the way to treat this monster disease! Unfortunately, Jake didn't have that chance because NOBODY wanted to believe me and him that he was hurting and really did have arthritis like his baby sister, mom and Grandma!

One of the things that bother me the most is..... will Jake and Hannah be able to have a family themselves due to all these many years of heavy drugs that I choose to give them and will their kids also inherit JRA??   There has not been any studies on JRA kids having children of their own inheriting  JRA.  At this point researchers know more of sibling pairs than parent-child pairs with JRA.  Like I said, I should of played the lottery! What were my chances of me having JRA just like my mom and then having a child with JRA, then another child with JRA??  So for those people who are inconsiderate..... I did not choose to have a family knowing they'd have JRA! 

This is why I am committed  to the Arthritis Foundation and support research. I want to have grandchildren one day and don't want them to have the same life that Jake and Hannah are living everyday!  We need to find a cure and better medications for these  precious children!
  Arthritis is the #1 Disability in our country and is simply Not acceptable!!