Family Rheumatoid Arthritis Stories: A Help or a Hindrance?
Due to the interactions between genetic predisposition and other factors, it’s not possible to predict who will have RA and who won’t. That said, one of the greatest risk factors for developing RA is having a family member with the condition.
First-degree relatives of someone with RA — parents, siblings, children — are approximately three times more likely to develop the condition. As well, if one identical twin has RA, the other is up to 15 percent more likely to develop RA. For fraternal twins, the risk is less than 4 percent.
The Human Genome Project has made it possible to study huge populations of genotypes and researchers expect that the genetic picture behind RA will become much clearer in the near future. Meanwhile, can it be helpful to know what RA is like for other members of your family who have it, or will learning about their experiences get in the way of coping effectively?
Family history: hindrance and help
Effective treatment is a relatively new thing in the field of rheumatology. Only within the last few decades has control of the disease been possible and the approach to treatment changed to one of working toward remission. Prior to that, people with RA quickly became very disabled, many eventually requiring a wheelchair.
People who grew up with relatives who had the condition therefore understandably have a fairly dire understanding of what RA is. For instance, Traci Martin tells the story of how her grandmother had severe RA and used a wheelchair since she was in her 30s. When Tracey herself was diagnosed with RA, her first thought was: “Oh my God … I’m going to end up like my grandmother.” She recalls being depressed for months.
She is not alone. Many people in the community have been devastated to receive an RA diagnosis because of their family’s experience. What they don’t know is that treatments have changed and their experience of life with RA will likely be very different from that of their family members. Although not everyone responds to treatment, very few now become so disabled that they need a wheelchair. In fact, many live close-to-normal lives.
On the other hand, having RA in your family can also be a help. Living with RA can make you feel very isolated. Only 1 percent of the population has this condition and that can make it hard to find a friend who knows how you feel. But when you have a parent, an aunt or a grandparent who knows what this condition is like, you have a built-in support system right in your family.
I know first-hand how helpful this can be. My mother has fibromyalgia and when I developed it years later, it was such a comfort to be able to reach out to her to make sense of what was happening to me. Later, when my sister developed it, too, my mother and I gave her as much support as we could.
If you have a family history of RA, try to use it to your benefit. Seek support and information, but remember to balance it with support and information from other sources, as well. This can include your rheumatologist, books and websites about RA, in-person support groups and the online RA community. They say it takes a village to raise a child, but it also takes a village to help someone with RA find their way through.
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