RA Runs in Families
RA runs in families: Part 1
I’ve always heard RA runs in families
I have always said that the people you meet when living with this disease—or because you do—are the greatest side effect. That’s one of the things I would not change even though I hate rheumatoid disease. Some of my best friends connected with me first through RAW or its social channels.
A few years back, I met this spunky blonde named Shannon. She took it upon herself to persuade her city council to create a proclamation for Rheumatoid Awareness Day. It’s not hard to imagine how a few years later she ended up on the RPF’s board of directors.
RA runs in families—and makes friends into family
Last year, Shannon and I were finally together in person when she traveled with her husband to Arizona for the US Pain Foundation’s Real Hope, Real Heroes Gala. My significant other was my daughter KB—we had great fun chatting about wedding gowns since Shannon’s daughter and KB were both getting married last fall. Coincidentally, we were all named “Young” at the time.
I learned about Shannon’s other daughter when she volunteered to do some work for RPF. Sharing our two—each—beautiful young daughters was just another link between us. Soon there would be one more that we did not expect.
You might also like to read:
RA runs in families—but what about our families?
When I heard the news of a new at-home RA test, my daughters were my first thought. Testing for three antibodies instead of just one—good idea. And not having to convince my daughters to find a doctor who believed they were at risk for RA, actually go to the doctor, and then go to the lab—great idea.
Meanwhile a similar train of thought at Shannon’s house thousands of miles away. Suspicious symptoms in her mom should be checked out—hmm, good idea. Make sure the girls are ok, too—great idea.
Over the next couple of weeks, our family members got the test kits in the mail. They each pricked their fingers and gathered a few drops of blood in a tiny vial. And they mailed the kits back to imaware™. And then we waited for the reports.
Yes, I also pricked my finger—but let’s save that story for another day.
They say RA runs in families—it that true?
You’ll read many places that rheumatoid arthritis cannot be inherited. Technically, that’s true because there is not one specific “RA gene” to be passed down in DNA. However the old adage “RA runs in families” is actually more accurate. Through our parents, we inherit variations of genes and combinations of those variations can confer risk—not the disease itself.
Harvard genetics professor Dr. Robert Plenge says that children of people with rheumatoid disease (PRD) have a five times greater risk of the disease. The risk of RD / RA in the general population is one percent—it is 5% in children of PRD. According to Dr. Plenge, there are probably dozens of genes that each contributes a very small risk. The other factor, which we have discussed on RAW, is triggers—things we are exposed to which also increase risk of the disease.
Next time, we’ll finish our story. BUT MEANWHILE, WHAT’S YOUR STORY? Does RA run in your family? Are you worried about your own children or grandchildren? Share in the comment box below.
Click to read part 2: Possible Rheumatoid Arthritis
Recommended reading
- 15 Early Symptoms of Rheumatoid Arthritis
- Does Diet Influence the Risk of Developing Rheumatoid Arthritis (RA)?
- Genetics & Rheumatoid Disease: More Complicated Than Cancer?
It definitely runs in my family! My maternal grandmother had RA and was on daily prednisone. My mother has more than Osteoarthritis but she prefers to live in denial. I have seronegative inflammatory poly arthritis which for today’s purposes is being treated like RA. Definitely praying I didn’t pass this on to my son.
I guess my greatest fear overall is passing RAD to my kids and grandkids. More so than the fact of what has and may happen to my body. Neither parent had it or my brother. My sister and I both have it. So I started looking back through the family and found a link. My mothers parents didn’t have it or any of their brothers or sisters that we know of but my grandpa’s brother had three daughters who all suffer with RAD. Two of my grandsons also have a grandparent from the other side of the family who has it. I try not to worry to much but knowing what I do about this well let’s just say that is a living nightmare. Hopefully they will never have to know and hopefully they will find a cure. My crusade is, Warriors and Angels. We are all warriors and some are now angels.
Thank you so much for this article. You have no idea how it hits home.
My mother had R.A, Raynaud, Sclerodema and most possible fibromyalgia. She passed away in 2005 at the young age of 73.
I was tested back in 2000 by her Rheumatologist for Scleroderma and tested negative. Because the doctor did not believe that RA was inherited and because I was not her patient per se, she refused to test me for RA.
I now live with sero-negative RA, Fibromyalgia and I believe I also have mild Raynaud. I still don’t have a doctor because my GP believed that my symptoms are all in my head.
I’ve known all my life that RA is inherited… I wish doctors would have too and paid closer attention to my/our symptoms.
Louise,
Three words.
FIRE. YOUR. DOCTOR.
Period!!!!
You’ll never be well assessed with a doctor that doesn’t believe you – their patient.
My doctors get one shot with me. ONE. If I hear doubt in their voice whatsoever….. they are gone and i’m onto the next one. This process eventually led me to a team of doctors I can truly trust and that trust me, their patient, to give me the benefit of the doubt at minimum. This experience has been an eye-opener on the role we must take in our own care. No one takes care of “you” like YOU.
PLEASE — don’t give your doctor another chance. He/She bailed on you with benefit of the doubt over your own body…… Now it’s time for you to bail on them. They are in this for the wrong reasons. Save yourself.
I’ve no idea if it runs in mine or not. Neither mom or dad had RA, three of my grandparents passed before I was 10 and the one who lived into my adulthood had everything. I can remember a doctor telling her she had a fever and by the time she got home she had typhoid fever. So when she had arthritis she had Rheumatoid arthritis and then Juvenile Rheumatoid Arthritis and then Lupus and it went on and on. You had know Isabelle, but she was a hoot.
Heck she may have had malaria or mumps as a child, no one knows for sure.
Some things are too fun to know the truth.
I don’t know of anyone in my family having RA. Not my mother, grandmother or great grandma. As a matter of fact, I only found out I had RA when my daughter was diagnosed with it and told me to get tested. I don’t even understand it…
What about people like me who are sero-negative?
Amy, this article still applies.
But I also wrote about seronegative specifically a couple of times. Here’s one from a couple weeks ago
https://rawarrior.com/seronegative-rheumatoid-arthritis-hazy/
I am also seronegative. I had a younger half sister who passed away last year from ISL (RA Lung).
She was 52 and RA Positive.
smoking – some evidence suggests that people who smoke are at an increased risk of developing rheumatoid arthritis
My Dad had Sarcoidosis, his dad ( died before I was born) had some kind of crippling arthritis ( no one alive knows what kind), my mom had severe osteo arthritis and psoriasis, a second cousin of mine has RA, and there is a spattering of different autoimmune disorders in my extended family. Neither of my brothers have chronic autoimmune but both of them and my mom were treated for non Hodgkin’s lymphoma. As a teenager I had severe mononucleosis and in my 30’s I developed psoriasis. Now I am being treated successfully for RA with Orencia and MTX. I don’t have any autoimmune symptoms with treatment.
It’s wonderful that treatments are helping you. That’s amazing.
My maternal great grandmother had RA, was in a wheelchair most of her adult life.
My mother has psoriatic arthritis.
I developed RA about a year after breast cancer, implants, shingles and hyperthyroid crisis…
makes me wonder if these illnesses were triggers for RA, with family history being another risk factor.
The only family members I have on either side with any autoimmune disease is my brother who has graves disease and my dad did too. One of my mom’s cousins had MS and another has Crohns diagnosed in her 60s. I am the first person anyone in the family knows of to have any of what I have; RA, Lupus, Sjogrens Syndrom, Addisons Disease, Hashimoto’s, and Psoriasis.
Where did all this come from???
My mother and I both have RA that started in our early 20’s. I also just ready a family story and my great-grandmother’s sister also had it way back in the late 1800’s. We lived in different countries, different centuries…. I’m a true believer that RA does run in families and is not just environmental triggers. I have no daughters, but I do worry about my son, who at 5 years old had a week of limping and crying out in pain. The doctor did do blood tests and xrays and diagnosed him with a virus, but I still watch him like a hawk. He has never bounded up the stairs like a normal child. Are you ever too young to do the imaware testing? He is now 11.
That testing is only approved after age 18 at this time.
But if you see symptoms, I’d ask the pediatrician to run every test available: CCP, RF, 14-3-3eta.
Unfortunately, I am not aware of RD running in my family. After ten years of trying to figure out what was wrong with me I was first diagnosed with fibromyalgia. My Dr. finally decided to check my inflammation and my rheumatoid numbers which were very high. She sent me to a Rheumatologist who told me “We need to be very aggressive in treating my RD “. I consider her my guardian angel. Unfortunately, she left the state. I am getting to know her replacement and so far so good. I know I am lucky to have found an amazing Rheumatologist the first time. I remember you writing about how hard it is to find a good Dr.
Now it turns out my daughter has been diagnosed with Crest disease which is a form of Rheumatoid Disease. She is only 36 with two small children and in horrible pain. It kills me to watch her navigate her life working full time and trying to be the best mother she can. She has a daughter who is eight and so far no signs of illness.
Hi Janet. What a shock for your daughter. I hope she can be as well as possible with medications.
These diseases definitely run in my family. I have very severe RA (dx at 13); my mother had SLE (lupus); my dad developed milder RA in his 50s, as did his sister. My grown daughter has developed Mixed Connective Tissue Disease (MCTD). I had one cousin on my mother’s side with RA. My mother also had a half sister with RA. I have two sisters without RD.
These diseases definitely run in my family. I have very severe RA (dx at 13; now 63); my mother had SLE (lupus); my dad developed milder RA in his 50s, as did his sister. My grown daughter has developed Mixed Connective Tissue Disease (MCTD). I had one cousin on my mother’s side with RA. My mother also had a half sister with RA. I have two sisters without RD.
My maternal grandmother had RA. She was never tested bc they were poor immigrants with few healthcare options. But everyone knew Nonna had a problem. Her hands, fingers and feet were greatly deformed and she had issues with her other joints and her heart. The disease bypassed her daughter, my mother who did however suffer from OA from a young age. But RA/RD decided I was a prime candidate. I’ve been dealing with this chameleon disease for over 20 years now. When I was finally dx’d there was no early intervention. I wasn’t given a DMARD or a Biologic till much of the damage was already done to my joints and lungs. Blessedly, I have a terrific rheumy now who has stuck with me thru thick and thin. He has me on a regiment of medicine and movement that has me enjoying a remission after five long years in a flare. I thought life wasn’t worth living back then. I prayed every day for release from my pain racked body. But the Lord had different plans. I’m still here and enjoying reasonably good health again. I know a flare can be just around the corner but I no longer live my life worrying about that. I try to live in the moment and enjoy every second in remission I have. God bless everyone who deals every moment of the day with this debilitating illness. I pray for your healing and comfort. And I pray for a cure for this myriad of illnesses known as RA/RD.