"I Never Thought About It"
It wasn't the pain. It wasn't the swelling. It wasn't the fact that she had to limp to her classes. What finally got Shanelle Gabriel to go to the doctor was her hair falling out. Then a sophomore in college, Gabriel — always a very driven individual — explains that, like many women who experience the symptoms of rheumatic disease, she let the demands of school, family, and work crowd out the concerns she had about her health. "I didn't prioritize," she says.
Once Gabriel finally did see a doctor and received a diagnosis of lupus she experienced a mix of emotions. While she was relieved to know what was wrong, she says she also struggled with confusion and a lack of understanding about her disease (both on her part, and on the part of others). "I didn't really know what lupus was," she says. "I never thought about it."
A Disproportionate Impact
While rheumatic diseases can affect anyone, from very young children to the elderly, women in the prime of life are the most likely to be affected. In fact, during their lifetime, 8.4 percent of all women will develop a rheumatic disease compared to five percent of men.
Here are some fast facts about women and rheumatic diseases:
- Seventy-five percent of the 1.3 million American adults who develop rheumatoid arthritis are female.
- Women are two to three times more likely to develop rheumatoid arthritis and 10 times more likely to develop lupus than men.
- Rheumatoid arthritis often strikes between the ages of 35-50, while lupus often develops between the ages of 15-44.
In light of these facts, it is particularly important for women, and the physicians treating them, to be educated about rheumatic diseases. Rheumatic diseases can be devastating and can affect every aspect of a woman's life from career to the decision to start a family. While rheumatic diseases may be disruptive, there is no reason women affected cannot lead full, fulfilling lives, especially with early diagnosis and treatment during "the window of opportunity," which is the first weeks and months after symptom onset.
Practicing Rheumatologist Alan K. Matsumoto, MD says in his practice 70 percent of the patients he sees are women. With inflammatory rheumatic disease (compared to osteoarthritis), Matsumoto says, the proportion of patients who are female is even higher. With rheumatoid arthritis the ratio of female to male patients is three or four to one, he says. With less common rheumatic diseases — such as lupus or scleroderma — the ratio grows higher yet, Matsumoto says.
Pregnancy and Rheumatic Disease.
Because Rheumatic diseases can complicate pregnancy it is important for affected women of childbearing age to consult a rheumatologist if they are considering becoming pregnant. Many of the drugs used to treat them are contraindicated during pregnancy and complications from some forms or rheumatic diseases may worsen during pregnancy. All of these factors, in addition to the ongoing pain and disability that often comes with rheumatic diseases, can cause women in their childbearing years to struggle with whether or not to have a child. "It's a very difficult decision for some patients," says Matsumoto.
While the decision to have a child may be difficult for women with rheumatic diseases, it does not mean that they cannot have a successful pregnancy. A study presented at the 2011 Annual Meeting of the American College of Rheumatology studied 333 pregnant women with stable systemic lupus erytematosus found that 80 percent had successful pregnancies. According to Guillermo Ruiz-Irastorza, MD, PhD and Munther A. Khamashta, MD, FRCP, PhD — the authors of the ACR's fact sheet Pregnancy and Rheumatic Disease" — pregnancy can be successful, but that doesn't necessarily mean uneventful. "Doctors and patients must be ready to deal with possible complications for both mother and child. Further, women should not consider getting pregnant until their rheumatic disease is under control," they explain.
Learning and Changing
As Gabriel learned more about her condition, she adapted. It wasn't easy. While her life had previously been a whirlwind of daily activity, she had to learn to slow down, take care of herself and listen to her body. A dancer in high school and college, she had to make the difficult decision to give up a cherished activity because it left her drained and took her a long time to recover. What makes her condition so frustrating, she says, is that she is still as mentally sharp as ever, but her body betrays her. She still knows all the moves, but can't dance. "Your body just won't let you do what you did before," she says.
Instead of despair, Gabriel — ever the optimist — decided to change her life. While she no longer dances, she is still a singer and a poet who has appeared on HBO's Def Poetry Jam. While she no longer goes out dancing at night with her friends, she goes out to dinner with them. Her life has changed, but she doesn't let it bother her. "You can't focus on what you can't do," she explains.
Gabriel encourages other women to listen to their bodies and to not be afraid to put themselves first. She says women are often overwhelmed by other responsibilities and need to seek the opinion of a doctor if they suspect they have a rheumatic disease. That way they can be referred to a rheumatologist in a timely manner, get the treatment they need, and get back on with their lives. "Take care of yourself," she says. "Don't apologize."
Are you inspired by Shanelle's story? Want to learn more about women and rheumatic diseases? Here's your window of opportunity:
- Read the Simple Tasks white paper, entitled "Rheumatic diseases in America: the problem, the impact, and the answers"
- Ensure Timely and appropriate referrals of women with rheumatic diseases
- Make sure women with rheumatic diseases have access to the medications they need ... at a fair cost
- Read about the PROMISSE (Predictors of pRegnancy Outcome: bioMarkers In antiphospholipid antibody Syndrome and Systemic lupus Erythematosus) Study
To learn more about the Simple Tasks campaign or about the ACR's advocacy issues contact Erin Latimer at (404) 633-3777 or firstname.lastname@example.org