inFlux 2005

story_Aleta Cadwallader
photography_Ben Anderson

“Give them to old men who look like me. Don’t give them to the healthy, young guys,” Dr. Muhammad Asim Khan said through a clear Pakistani accent across the crowded Newmark Theatre lobby to the conference director as she hurried to give away extra tickets to his lecture. He smiled through a thick black mustache tinseled with a few gray hairs, and his shrinking frame hardly filled out his heavy winter coat. Hunched over, he limped toward the theater doors, looking up through his giant cinnamon-colored eyes to direct his short steps.

Khan traveled two thousand miles from Cleveland to a Portland, Oregon, medical convention to present clinical research on a treatment that can halt the progression of and reverse deformities caused by a fatal disease. But the treatment has come too late for Khan. His disease has progressed so far that it would do little to improve his health.

Khan has Ankylosing Spondylitis (AS, pronounced ang-ki-LO-sing spon-dl-I-tis), an immobilizing disease that has completely fused his spine and skull, causing him to stoop drastically forward. A chronic inflammatory disease prevalent in males, AS usually develops in the teenage or early adult years of genetically predisposed people. Inflammation in the joints between bones, such as the vertebrae, causes the ligaments and discs to calcify and harden. AS has fused Khan’s pelvis and rib cage to his spine, up through each vertebra to his skull. His spine is locked into one long bamboo-like rod so that he cannot turn his head or nod — or even stand up on his own after kneeling down to pick up a piece of paper from the floor.

Khan knows that carrying this disease means decreased mobility for the rest of his life. It also can and probably will kill him one day. AS causes many complications, including abnormal and failing heart valves. Like those of many other AS patients, Khan’s ribs can no longer hinge open on his spine. If he were to have a heart attack, paramedics would be unable to compress his chest enough to resuscitate him. A simple fender-bender could crack the brittle, hollow straw that is his spine, and the resulting serrated edges could sever the spinal cord inside, leaving him paralyzed. Or it could stop his already compromised heart.

The condition’s complications are nothing new to Khan. He has suffered the pain and problems of AS for almost fifty of his sixty-one years.

Blood of Honey

When the British granted India’s independence in 1946, Calcutta erupted in violence. Muslims and Hindus demanded independent states. Northern India partitioned into a Muslim Pakistan, and millions of refugees, left homeless from the violence, migrated across the nation. At three years of age, Khan fled with his family from India to Pakistan, carried across the desert in the back of a moving van. During the next decade, the Pakistani government established small clinics in rural areas of the new country, but it inherited the only hospital in the border city of Lahore, Pakistan, where Khan’s family settled. The country that took in Khan’s family and provided him free education and medical care battled its neighbor over the disputed Kashmir region during the first decades of his life.

Neither his age nor his illness would hold him back. He never failed a class and never took time off for the pain.

At twelve, Khan started to notice pain and stiffness in his back but thought little of it. The symptoms hardly inconvenienced him then — they were just tiny obstacles in his everyday life. The pain limited his flexibility and affected his skill at sports, but Khan found ways to manage. Children all around him played cricket, running and throwing the ball. Khan chose a fielding position close to the wicket that required him to run less. He soon learned that by practicing honest umpiring, his peers would choose him to fill the stationary position. Being brutally honest was already in his nature. “I could never be a politician. I am as straight as an arrow, even though I have a humped back,” Khan says, chuckling.

As a child, Khan couldn’t twist his back to chase and slip through windows like the other boys. Instead, the twelve-year-old jumped off three-story-high walls when others would not. In retrospect, his bravery probably worsened the condition of his hips, Khan says.

As the young boy grew into adolescence, his symptoms worsened. He finally admitted to the other boys that his back hurt most of the time. To recompense his pride, he began to excel academically. His teachers skipped him ahead twice.

When the back pain sharpened and spread from his tailbone upward, Khan’s parents searched out the chief of orthopedics at the local hospital, the highest-held medical opinion available to them. Rheumatologists (arthritis specialists) were unheard of in Pakistan. Similar symptoms shared by tuberculosis (TB) patients, including hip and chest pain, led the doctor to prescribe anti-TB drugs and order frequent bed rests and hospitalizations. Because exercise is crucial to keeping the joints mobile, Khan’s pain only worsened.

A long year passed. The anti-TB medication did nothing to help the restless child. His doctor ran out of solutions and never reached a proper diagnosis.

By the time Khan was sixteen years old, his doctor sought anything that might help relieve the pain. He intravenously injected Khan with honey imported from West Germany; many Muslims believe, as it is written in the Qur’an, that honey has a special ability to heal ailments and cure diseases. Risk always accompanies the injection of foreign substances into the blood stream, though. However harmless it turned out to be, this treatment also proved worthless.

“All the honey I got — that’s why I’m so sweet,” Khan teases.

While still sixteen, Khan attended the King Edward Medical College in Lahore as the youngest in his class. For the first two years he held the highest placement in his class, despite the chronic pain. Neither his age nor his illness would hold him back. When Khan lost the ability to lift his leg high enough to ride his bike to medical school, he purchased a Vespa — a motorized scooter designed for girls in skirts. During hospitalizations, he would climb out of his hospital bed onto the Vespa, parked next to him, ride through the hospital halls to class, and then return directly to the hospital bed. He never failed a class and never took time off for the pain.

Khan was in his third year of medical school and attending rounds with clinicians when his life changed dramatically. He met a professor who examined him, listened to the student tell his medical history, and diagnosed him with AS. The professor immediately prescribed phenylbutazine, a non-steroidal anti-inflammatory that dramatically affected his symptoms. The next day, Khan began to ride his bicycle again, and within weeks he was even able to run.

Bones of Steel

After graduating medical school at the age of twenty-one, Khan made plans to continue his education by studying a medical specialty overseas. That year, though, Pakistan entered a second war with India over Kashmir. Khan felt spurred to serve the country that had accepted his family as refugees eighteen years prior and had provided him with a free medical education.

A diagnosis of AS would surely keep the former refugee from serving in the Pakistan Army Medical Corps. But, during a routine physical to check soldiers for common physical ailments such as an irregular heartbeat or flat feet, the attending army physician forgot to check the mobility of his spine. The doctor remembered as Khan was fastening his last shirt button and asked him to undress again. “Come on, you want me to do all that again?” Khan asked discouragingly. The doctor dismissed the task, and Khan slipped into the corps. Khan served on the front line, stitching up army casualties. At night, when the soldiers advanced the line through the desert, Khan marched with them, opting not to ride in the air-conditioned ambulance. The ambulance was for patients, he insisted. When soldiers asked how they could get a ride, he sarcastically suggested they break their own legs.

The summer after the new physician finished his service in 1967, he arrived in London for his postgraduate medical studies. Cardiology was his first choice, but he knew that with his limited ability to bend, twist, and even walk smoothly, he would eventually be unable to lean over to administer CPR to resuscitate his patients. Instead, he chose orthopedics, knowing that one day he, too, would be under the knife for a total hip arthroplasty — a surgical procedure that reconstructs joints using metal implants.

By the 1970s, Khan decided to move to the United States to advance his academic career. Some of his classmates had already established themselves there and would be able to offer him a position, but Khan landed in Cleveland on his own terms. There he chose to study rheumatology — the subspecialty he was so intimately familiar with as a patient — and began research on AS.

“I won’t mind coming back to this world suffering from this disease again.”

That decade, medical advancements in the human genome project linked a genetic marker, HLA-B27, to AS. Researchers like Khan and his team were busy discovering why some people were predisposed to the illness and how that translated from DNA to disease.

Meanwhile, Khan endured a total hip-joint replacement, giving him bones of steel. His surgeons replaced his brittle bones with metal prostheses. Today, years after this major surgery, the rheumatologist shuffles with a side-step gait.

Soon after his hip surgery, his doctors found a fracture in his cervical spine, near the skull. They ordered him to wear a medical halo and vest, a seven-pound metal ring that doctors screwed into his skull to immobilize his neck so that the fracture could fuse and wouldn’t sever his spinal cord. Khan felt that the vest was too loose. He could twist and lean his neck too far, and he worried that the fracture would not heal. His doctor assured him that it was fine.

For five months, Khan slept sitting up. Despite his efforts, the fracture did not fuse on its own and Khan underwent surgery to manually fuse it. The determined doctor continued to see his patients. One frustrated and pain-ridden patient waited six months to see Khan for his own rheumatic disease. As the disabled rheumatologist carefully pushed the door open and entered the examination room, the patient told him that by seeing his own doctor struggling in the medical halo, suddenly he didn’t feel as bad. Following his spinal surgery, Khan wore the halo for three more months.

Facing the Answer

The landscape of rheumatology has improved significantly. With biotechnology in gene coding advancing dramatically during the late 80s and throughout the next decade, researchers found the receptors (structures in cell walls) for cytokines (small molecules that communicate between cells) and later investigated their role in the inflammatory response. In the last seven years, researchers have discovered that by blocking one of these communicators, the inflammatory response that causes the destruction and calcification in the joints of rheumatic disease patients can slow down or even stop. By pinpointing the mechanisms of rheumatic disease on a microcellular level, scientists could finally design a drug to block that receptor, halt disease progression, and reverse deformities. In 2003, the Food and Drug Administration announced the approval of a biologic drug for treatment in Ankylosing Spondylitis — a virtual cure.

For Khan as a patient, this revelation comes too late. His disease has advanced so far that his spine is already fused. The inflammation has nothing left to destroy, and the drugs can’t return what AS has taken away.

Today, Khan works continuously so that his patients’ immobility will no longer mean death. Because the new AS drugs work against inflammation and the immune system, they are risky and expensive. Some patients have rare, immediate allergic reactions to the medication. Some patients’ hearts stop. The most common danger of these life-altering drugs is severe, potentially fatal infections that can’t be staved off by a weakened immune system. Khan travels the world teaching other rheumatologists the parameters in which to administer these drugs so that the medications improve the lives of AS patients, not threaten them.

For Khan’s colleagues, his diligence is as impressive as his accomplishments. “Not everyone can handle their illness and keep going like he can. You have to be especially tough and especially smart,” says friend and rheumatologist Cody Wasner, M.D., who has seen many patients become unemployed due to depression and immobility.

As a patient and a doctor, Khan never expected to see a cure in his lifetime. Although the new biologic treatments are not a true cure, they are still overwhelmingly effective, Khan emphasizes.

“I won’t mind coming back to this world suffering from this disease again,” he says.

Last year, Khan celebrated thirty years in the United States and nearly a third of a century working with AS. At the medical conference in Portland, Khan couldn’t walk the ten city blocks from the Multnomah Hotel to the Newmark Theatre. He took the shuttle. But every day, Khan shuffles tiny steps toward eradicating his own deforming disease, knowing that although the cure he pursued for more than a third of a century has passed him by, it remains, thanks in part to his efforts, within reach of many of his patients.