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Show the joints, “My hands, wrists and feet would swell and ache so muchthat I couldn’t button a blouse. I took 18 aspirins a dayuntil I developed ringing in myears.” Caritey, who has twochildren (nowages 18 and 23), says she struggled “to give mykids as normal a moth- er as I could.” As her disease progressed,she says, “I hadtocalculate whetherI'd be able to walk across a parking lot.” Cortisone injectionsinto in- flamed joints provided only temporary relief. In 2000, Caritey enrolled in a clinicaltrial of a promising new therapy: Humira,a molecular “smart bomb” called a monoclonal antibody, which blocks inflammation. Within 18 hoursof herfirst injection, she felt a difference. Three yearslater, with biweekly injections, she works as a laborand-deliverynurse and goes hiking. “There’s no inflammation and no pain.” declares Caritey, now 48. “This medication has given meback the life I’d lost 25 years ago.” Humira, which won FDAapproval earlier this year, is the latest in a newgroupoftreat- mentsthat target specific proteins involved in inflammation, reducing pain and swelling and helping to prevent further damage.“They've Unexpectedly, medicines developed for one autoimmune disorder have proved effective in treating others. And the pace of discoveriesis accelerating. == rheumatoid arthritis. In trials, Antegren, the first in a newclassof biologicals called SAM(selective adhesion molecule) inhibitors, has reduced relapses and improved the qualityof life for patients with MS and Crohn's. “Everytherapythat helps in one disease sheds light on another,” says Dr. Joseph Craft. an immunologistat Yale University and a medical adviser to the Alliance for Lupus Research. “The good news for pa tients is that the pace of discoveries is accelerating, and so is the pace of applying these discoveries at the bedside.” Getting An Accurate Diagnosis or many with autoimmunedisorders, the biggest challenge is finding out what's wrong. “If you hadto pick one i feature of these diseases that stands above the crowd, it’s patient frustration,” 4 says Dr. Buyon. Early symptoms, such as low-grade fever or achiness, often wax and waneand are dismissed or misdiagnosed by doctors. Half ofthe people with lupus consult Corinna Vigil with nurse Cathy Jones at Kaiser Permanente Skyline clinic in Denver, where she goes for post-transplant treatment. Her lupus is in complete remission. revolutionized the waywetreat rheumatoid arthritis,” says Dr.Jill P. Buyon,a lupus specialist at New York University and co-author of The Autoimmune Connection. “The impact is unbelievable. Patients can go back to work, take care oftheir kids. Given early enough, these medications mayactually stop the disease processin its tracks.” three or more doctors over four or more years before getting an accurate diagnosis. “It took 14 months to find out what was Unexpectedly, some biologicals developed for one autoimmunedisorder have provedeffective in treating wrong,’ says Michelle Mayer, 34, a health-care re- others. Enbrel, another rheumatoid arthritis biological. is nowused to treat Crohn’s disease (which affects the bowel) and vasculitis (which attacks blood vessels). Remicade, initially approved for Crohn’s, helps treat ago, Mayer's hands became red and swollen. Doctors concludedthat the problem was Raynaud’s syndrome, an extreme sensitivity to cold. More than a year passed searcherat the University of North Carolina. Seven years continued LivingWell With A Chronic Illness By Margaret Blackstone Sharing Your “News” time | spend in doctors’ offices. For have multiplesclerosis. You mayalso have MS, oryou may be copingwith Tell who you need to tell, but don’t tell everyone. After | had endured a long diagnos- example, my blood must be tested periodically. My internist draws the blood and sends the results to my spe- anotherautoimmune condition. One tic process and calmed myself down, | _cialist; as a result, the blood work does thing we will have in common isthe disorientation we feel while doctors are trying to make the right diagnosis. wondered whom to tell and when to tell them. It is not as simple as saying, "Tell your family first.” You need to tell your not have to be repeated.it’s easier on my arm, my mind and my time. as one. It maytake months, even years, to be diagnosed correctly. During this time, we need to ask questions, but for unwavering support. Ifyour children are tellthem the facts calmly and simply. they are older, share informa- The oniy real invalid is the person who thinks she or he is one. | take nothing away from anyone's real suffering the questions often have no direct an- tion during the diagnostic process, be- by saying this. | simply mean, if you swers and may even be impossible to formulate adequately at first. Hf you are going through this frustrating period now, the best thingsyou can do foryourselfare to rely on those you trust, get plenty of rest and keep yourself occupied with positive activi. have periods of grieffor the “old you,” cause they'll knowthat something is up. As for your job, choose what you want to say and when, Above all, if you suspect that there will be repercussions at work, remember: You are not legally bound to tell your boss. ; Getting The Best Care can't completely put mind over matter, you can at least tend your mind. Respond to your own needs; do not postpone them. To that end, remind yourfamilythat you love them but that, for now, your health is the top priority. Above ail else, you need to remind yourself that you are still you, as good through as you grieve that some things _in your life will change, and you may not have a lot of control over how they change. Foryour sake and your health’s sake, try to approach this new chapter in life as a challenge, not as a defeat. Whateveryour treatment regimen, it helps immeasurably ifyou put together a helpful health-care team. | have found that working together with my internist and my MS specialist has vastly improved my care and cut down on the and as important an individual as you were before your diagnosis. For most of us, the process is a slow spouse orpartnerand very close friends ties, including meditation or other but sad is not bad. Sad is what you go means of relaxation that allow you to keep your mind free of fear or panic. After You're Diagnosed Try to think ofthis asadoorbeing opened, not closed. Of course, you'll PARADE MAGAZINE * OCTOBER 12, 2003 » PAGE 5 Living Well Margaret Blackstone is the author of The First Year—Multiple Sclerosis: An Essential Guide for the Newly Diagnosed (Marlowe). |
