Patients with lupus often get passed from pillar to post,” says rheumatologist Graham Hughes, MD. To ease the burden of those suffering from the disease, Dr. Hughes—who first described the antiphospholipid syndrome (APS) or Hughes Syndrome in 1983—opened the London Lupus Centre (LLC) in January 2006. The state-of-the-art diagnostic facility, alongside the Thames in the shadow of London Bridge, specializes in helping patients with lupus, lupus-related diseases, and APS.
There is expert and compassionate support for patients at every step of the LLC experience. Not only have all seven doctors on staff trained with Hughes and run their own lupus clinics, but the nurses and administrative staff have backgrounds in working with rheumatic diseases. LLC Manager Sandy Hampton, who is often the first person to speak with a patient, knows lupus from a personal perspective. She has spent time in intensive care and undergone a kidney transplant due to the disease.
The focus of the LLC is to treat the entire scope of problems that lupus patients encounter under one roof. “Each of our eight rheumatologists has a slightly different clinical specialty,” says Dr. Hughes, who is hoping to enlist doctors in other specialties to round out the team.
The team approach is important to LLC patient Cheryl Marcus, who needs the care of a dermatologist, a rheumatologist, and a nephrologist. “Last time I was in, Dr. Hughes heard something he didn’t like when he listened to my heart, so he arranged for me to see the London Lupus Centre heart specialist,” she says.
Marcus feels comforted by the fact that, at LLC, her many doctors are in close communication with each other. “They talk together about my case and make sure that factors like drug interactions and dosages are clearly defined,” says Marcus, who was hospitalized for three years due to severe problems in this area in the past. “It’s great to not have to run from one hospital to another to get to see the doctors I need.”
Because of infertility problems and risk of miscarriage for women with lupus and APS, the LLC holds a pregnancy clinic every Monday with 30 to 40 patients in attendance. These women come for the care, but stay for the camaraderie of talking with others in their same predicament. Interaction of this kind is highly encouraged by the LLC. An annual tea party is held for mothers who have benefited from the LLC’s services. They return with their babies for a celebration of the miracle of birth. “It’s a bit chaotic, but actually quite nice,” says Dr. Hughes.
Successful Start
Success stories abound, including one of an American who was misdiagnosed with multiple sclerosis (MS). He spent five years paying out of pocket for very expensive treatments before coming to the LLC. “It’s not uncommon for APS symptoms to lead to an MS conclusion,” says Dr. Hughes. With proper testing, the patient was found to have APS and now takes aspirin to alleviate his difficulties.
A local dart champion from a small English village began to have trouble remembering where the high mark was on the board. As her memory loss progressed, she came to suspect that she had Alzheimer’s. The LLC relieved her anxiety when physicians there discovered a mini-clot and started her on anticoagulant therapy. She now tests her blood regularly to monitor her international ratio, a procedure that Dr. Hughes highly recommends for all APS patients.
Education is a big component of the LLC’s work. Besides generating books and pamphlets for patients, Dr. Hughes and his staff lecture to general practitioner seminars and lupus symposiums throughout the world. “I tell general physicians that they should always think of lupus when a patient presents with a lot of vague symptoms, such as fatigue, memory loss, migraines, or claustrophobia. It’s terribly easy to dismiss these, but the test is very simple, and when it is APS it is so treatable,” says Dr. Hughes.
Patient-exchange meetings allow LLC patients to talk to others with similar conditions or disease complications, providing mental and emotional support. When there is a lot of information to digest, Dr. Hughes feels that the best way for someone to really “hear” what they need to know is to get it from someone with first-hand experience. For Marcus, who was diagnosed with lupus before it had much media attention, the feelings of isolation were enormous. She appreciates being able to go into the LLC waiting room and know that everyone there is dealing with problems like hers. “If there is someone else there with a leaky aortic valve, she’ll talk with me and I won’t feel as alone as I once did,” says Marcus. “Having knowledge of your own condition and being able to make a connection with others at the Centre makes me feel like Robinson Crusoe finding his man Friday.”
Francine Kaplan is a medical journalist based in Georgia.
