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 "ohh..so 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!!

9 comments:

  1. Thank you Heidi for sharing your family's experiences. You have touched so many lives and you and your children have taught us so much. I too wish JA would GO AWAY!

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  2. I know this was as hard as it was easy to write...something you probably have written a number of times in your head. You probably wanted to believe you really didn't hear something or they really didn't mean what they said....BUT I'm so glad you did write this! There ARE IGNORANT & INSENSITIVE people out there, who just don't get it, and as tough as it is---we need to educate them! Thank you for "venting"-- many of them need to hear it or they won't get it! Heidi, you certainly have a cross to bear, but you also have the strength & grace to help change the outcome of Jake & Hannah's futures, as well as yours &
    Bobby's. You have way more people on your side to lift you & the kids up when people don't think before they speak...so hang in there! We love you all and
    want only positive thoughts & words for you each!

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  3. One of the things that I remember about you the most is knowing that you were planning on not having children because you thought there was a high risk of JA and you didn't want your children to live what you went through. I also remember that *you were told it wouldn't happen*, the odds were very, very, very low!!! I think that some people don't think before they speak, and others I think feel more powerful when they are putting others down. I'm so sorry that you have to go through this. You are a role model to so many of us. You are so strong and brave for your children, and they are so blessed to have you. No one would expect something like this to happen, and certainly no one would want this for their children! I love you & your family!

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  4. Oh Heidi! I read this and thought... there are so many things we DONT know when having a child... Seriously, yes there are tests to check for many different disorders, but how many of us would choose to eliminate a pregnancy because of "the possibility?" god is in control, i am reminded of that daily, and we are in this together. I too, like you should have played the lottery. But I would have my children all over again , Arthritis or not! <3

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  5. Hi :) I am a stranger who happened to stumble across your blog here, Im 28 years old and I had JRA since I was 4 years old. Now I have the good old adult RA, and there are some tough days as you know! but none so tough I wish I hadn't been brought into this world. Life with struggle can be more wonderful at its best parts than life lived trial free. People who ask how could you have children are ignorant.

    No one in my family had RA before me, and my sister never got it. Genetics are a roll of the dice. I feel your families pain, but in a weird way your blessed to have each other to relate too. I always felt alone as a kid dealing with my JRA at school and having to face down PE teachers by myself. You guys stick together and nothing, not even JRA can stop you :)

    Tell your kids they are awesome, and they are part of the JRA club and we are the coolest! I always tell my friends when Im having a bad joint day, that they just have to wait till were both in our 80's and ill run circles around them cause ill be used to feeling old already :P

    praying for your family, send me a message if ya need anything or want to compare notes!

    Catherine

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  6. Wow all I can say is you're a very strong woman and I've often wondered if I could pass arthritis to my kids. I've been living with JRA since I turned 4 so I know quite a bit about the disease but was always told it couldn't be passed down and that it isn't genectic but honestly its hard to know what to believe anymore. I have a 2 yr old and a 3 yr old and I pray they will never know pain like I have...I'm 25 yrs old now and having arthritis is basicly all I've ever known. Good luck to you and your family and god bless you all...remember to stay strong!!

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  7. Hi Heidi,

    Stumbled across your blog on the web. Thank you so much for having it. I'm 27, and been living with JRA from age 3. This evening my four year old son woke up crying, his legs hurt him, it's the fifth time its happened in the past few months. I know what it is, and it makes me so angry. I feared having children because of this but doctors assured me over and over that it was near impossible. Holding him tonight while he wailed that he was hurting just killed me, I feel like I did this to him. I hope in the coming months that I find the strength you have. Know that it's a blessing to be strong. I wish you and your family all the best.

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  8. I came across your blog after being up all night worrying. I got up this morning and typed in the search bar: "how to trust God when your baby is diagnosed with JRA". We don't have an official diagnosis yet...but we have every reason to believe that we will be diagnosed in a few days at our next Dr.s appt. When I say "we", I really mean our beautiful and amazing foster son that we will soon adopt. I also mean my husband and 3 beautiful biological children becuase it will mean a change for all of us. I know NOTHING about JRA and am trying to learn. My baby is 2.5 years old. What do I most need to know? How should we approach it? I cried last night out of guilt that I just can't get to a place where I trust God with this even though He has shown me many times I can trust Him. Any help or insight you could give me would be helpful. We go to P.R-ologist on Monday.

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  9. hi!! i came across your page after leaving the doctor tonight with MANY concerns AND lots of confusion....6months ago my daughter was diagnosed with JRA.she is now 3yrs old and has been on very strick and intense treatments since, at the end of this month she will be getting splints for her legs.i have a great rheumitologist who explained to me at time of diagnosis that it is not hereditary nor contagious.Well tonights visit to the hospital was with my 6 yr old son, who until now had NO signs of any illnesses or pain EVER!!!! He got a positive on strep throat and scarlet fever..while we went in for this reason the doctors saw indications of JRA and we are currently waiting on the rhemitoid factor tests to come back.I WOULD HAVE NEVER IMAGINED ONE NOT TO MENTION TWO OF MY BABIES BEING SICK WITH THIS CHRONIC ILLNESS.It breaks my heart into more than a million pieces to think there is nothing more i can do than help make it as easy as possible.i just want to be able to take it away...after reading your blogs i feel a little relief to see another family who is going through this, and seeming to do it with great courage and strength!! as i left the doctor tonight trying to hide my pain and tears, for risk of scaring my son as he has seen all that his baby sister had endured with the JRA.all i couldx think is WHY US? WHY THEM?WHY WOULD YOU DO THIS TO MY BABIES GOD? WHAT HAVE I DONE WRONG? WHAT COULD I HAVE DONE TO PREVENT IT? but reading your blog has really inspired me to take this journey heads up and heads on!! instead of why us? why not us?? we are stong and have been through soo much.this shall not be taken lightly and is very serious, but at the same time as long as we are facing it i would like to do it 100% and in good faith :)) thank u for ur blog and letting the world and moms like me with the same problems and issues hear something so inspiring!! keep it up and thasnk u soooo much again :))

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