In the summer of 1983, I was seven and a half years old. My mother was packing up her suitcase to go to visit my grandfather in Jerusalem. It was supposed to be a short trip, perhaps two to three weeks at the most because she was leaving my older sister, younger sister and me with my dad while taking my three youngest siblings with her. My grandfather, her father, was dying and she wanted to see him before the time came. She was scheduled to leave the following evening but when morning came, she received news that my grandfather had passed away in his sleep. My mother never got to say goodbye and since she had not seen him in nearly ten years, she was hard hit. During the early morning hours, my grandfather died in his sleep and the doctors believed he had a silent heart attack. That heart attack was due to systemic inflammation involved with rheumatoid arthritis (RA).
As I was growing up, I often heard my mother and my aunts discuss “the arthritis” my grandfather had. They never specifically used the word “rheumatoid arthritis,” and they always called it “the arthritis.” The arthritis they referred was diagnosed in the late 1960s and forced my grandfather to struggle for nearly twenty years with him losing the battle in his early 60s. That arthritis confined him to a wheelchair for months at a time and minimized his ability to use his hands and arms. My mother told me that for one year my grandfather could not lift his arms to dress himself, and then, the function in arms miraculously returned. That arthritis caused damaged to his kidneys and eventually, his heart.
After receiving my diagnosis, I told my mother and she never once mentioned that “the arthritis” her and my aunts often discussed was rheumatoid arthritis. The more I educated myself about RA, the more I saw the pieces of my grandfather’s struggle make sense to me. That heredity factor that my rheumatologist mentioned did in fact exist in my family line, and no one was talking, not my mom, not my aunts, not my uncles, and not even my cousins. All these people knew about my diagnosis and they were not saying a word. Finally, about eight months after my diagnosis, I got some courage and asked my mother who confirmed that my grandfather’s arthritis was, in fact, rheumatoid arthritis. I asked why she never told me especially with all the years I searched for answers and even after diagnosis. She said did not know if my symptoms were similar and because my grandfather’s diagnosis and prognosis was much different than mine, she saw no reason to alarm me.
My grandfather was diagnosed more than forty years before I was and at a time when disease modifying drugs were non-existent and the medications that were available only minimized pain and dealt with flares. Further, when my grandfather was diagnosed, very little information was out there about the disease so he did not have chance to halt the progression of the disease or to continue to live a full and productive life. Even though I was hurt that my mother never told me, I was relieved that she didn’t. Had she told me, I would have been discouraged from learning everything I could about RA and in doing so, I would not have had enough belief in myself to fight back, to want to be successful in my long term care and to still enjoy my life regardless of RA.
Coming to terms with my diagnosis took me through the many steps towards acceptance. When diagnosis came, it was not a surprise to me since I knew I was sick. In fact, I had been sick most of my adult life and even started having symptoms as far back as my teenage years. As a result, I have learned that the secret to living a normal life means accepting that you can despite your diagnosis. It also means that you accept your diagnosis today, but not necessarily, tomorrow. Symptoms and flares come without warning so you have to take each day one at a time, realizing that tomorrow might be different. Acceptance does not mean you admit defeat because you are not giving up. It means that you know that you have limitations despite your abilities. It also means you must welcome change and that you clearly understand that change is always imminent and not in your control. This entire acceptance idea does not mean that I don’t worry about the future. I worry my future and I worry about my children’s future and the affect that this condition has on us. I worry about being disabled and I worry more than anything that I pass this disease along to my children.
Is RA inherited?
As a parent with RA, you know all too well the limitations of this disease. You hate that you have this disease, but you are glad it is you and not your partner or your children. You have so many questions about this disease but the one that stands out most to you is whether you will pass this disease on to your children. A couple months ago, my son was having aches and pains in his feet and legs. These were not new. They come and go every so often for the last three years. I have been to doctors who explain two things to me: flat feet and growing pains. Needless to say, I lost a lot of sleep. As a parent struggling on a daily basis with the unpredictable nature of this disease – a disease that caused my maternal grandfather so much pain and suffering and eventually took his life – I am very scared to pass this disease on to my children. Like many, I keep saying that that “if I had only known prior to having children . . . .” On the other hand, when I look at what I could have missed out on, I am glad that I did not know. Still, my mind constantly worries about the future – their future and mine.
Rheumatoid arthritis (RA) is a condition that causes inflammation of the joints, with swelling, redness and pain. It also can affect the organs of the body. It affects 1 in 50 people and is three times more likely to affect women than men. It is most often diagnosed in young and middle aged adults but it can also affect children and the elderly. The exact cause is unknown but certain risk factors can increase development of the disease. As far as heredity goes, research shows that RA is not inherited, but particular genes can increase a person’s chance of developing the disease. In fact, of 100 people with a mother, father, sister or brother with RA, up to four will also develop the condition. In the general population, one in 100 people will develop RA. However, those who carry a particular gene have a higher risk of developing the disease.
With genetics and family history being risk factors, some people have a higher chance of developing the disease. Because blood tests help with diagnosis, parents often wonder whether they should get their children tested in hopes of understanding what the future might hold for their child. However, most rheumatologists do not recommend testing if children who are not showing clinical symptoms despite a parental diagnosis. This is because even though children may test positive for a rheumatoid factor or an ANA (antinuclear antibody – found in patients with an autoimmune disease, infections or chronic conditions), it does not mean that they will develop RA. In fact, the disease rate is only 0.8% compared to 0.5% of the population in persons who carry the HLA-DR4 gene (the gene linked to RA).
In rheumatoid arthritis patients of European ancestry, as many as 60-70% carry the HLA-DR4 gene, compared with 30% in the general population. In patients that actually develop the disease, these numbers indicate that genes play only a small role in the risk. The environment plays a much stronger role and recent studies have indicated that there is a more direct relationship between smoking and the HLA-DR4 gene that may lead to increased risk of RA development.
The bottom line is that heredity plays a small role in the development of the disease. Therefore, test your child only if he or she is showing signs and symptoms of arthritis. Do not ignore the warning signs of RA, but do not scare your children because of your own fears. I often have to remind myself that I am lucky that my diagnosis came in 2008 and not in 1988 or 1968. So much progress has come in the last 20 years and perhaps, the next twenty years might bring remission for all or a cure for this disease but for today, I am grateful for the knowledge and advancement there is out there, Of course, I continue to be hopeful for my children’s generation and for future generations.