CHEPTOEK BOYO STORY: HOW I WAS DIAGNOSED WITH RARE AUTOIMMUNE DISEASE-BEHCET’S SYNDROME

I have always been a health-conscious person, priding myself on taking care of my physical and mental well-being. I enjoy life but maintain boundaries to avoid extremes. I undergo annual medical checkups and visit my gynecologist at least three times a year.

However, late 2018 from September around my birthday through December I began experiencing unusual fatigue. As someone who priorities eight hours of sleep, I was alarmed to wake up exhausted daily, forcing myself to work through the tiredness.

On December 20, 2018, I noticed a canker sore and self-medicated with a mouthpaste after Googling remedies. Two days later, it worsened: five more sores appeared, and the pain became unbearable. A dentist cleaned my teeth and prescribed a mouthwash, but the condition deteriorated. Since I was traveling to the village for Christmas, I consulted my brother’s physician who recommended a different mouth paste. Yet, the sores multiplied until my entire mouth was covered by my return to Nairobi.

January 10, 2019: I visited a hospital in Hurlingham. The doctor immediately suggested an HIV test. Shocked by her assumption, I asked, “What other diseases cause canker sores or mouth ulcers?” She listed herpes, syphilis, cancer, and other STDs. Traumatised, I agreed to testing. All results were negative. Diagnosed with gingivitis, I was given bacterial/fungal medications and a mouthwash. The sores cleared briefly but returned after the treatment ended.

February 18, 2019: A dentist referred me to an ENT specialist at the same hospital. By then, my eyes had turned bloodshot (though painless). She prescribed antibiotics and steroids. Again, the sores vanished temporarily but resurged post-medication. On March 6, she increased the dosage same outcome. My voice began fading, my eyes worsened, and I’d spent KSh40,000 with no answers.

April 8, 2019: I switched to a top-tier hospital. The new ENT prescribed yet more antibiotics. Over Easter, I picked up from Kericho and she asked if I’d smoked weed due to my red eyes. I booked an ophthalmologist in Eldoret, who found my vision perfect but prescribed eye drops. Returning to Nairobi, my eyes cleared briefly until the ENT meds ended, and the sores and redness returned.

By now, the sores had spread to my throat, forcing me onto a liquid diet. I coughed blood, convinced I was dying. The ENT referred me to a rheumatologist for autoimmune testing. Thyroid disease, ANA, VDRL, full blood count, ESR, and TSH tests, all negative. Cost: KSh69,750.

April 30, 2019: Back at the ENT, still coughing blood, I was advised to undergo a biopsy. On May 1, I had the surgery covered by insurance, KSh215,000). Post-op, I continued medications and a liquid diet for two weeks. Though the sores cleared, tests revealed no cancer, viral, or fungal cause. I’d lost 10kg but was discharged without answers.

Days after finishing the drugs, my voice vanished, my eyes reddened, and joint pain began. Another ophthalmologist confirmed perfect vision. The ENT referred me back to rheumatology. Exhausted and in pain, I returned despite friends urging me to change doctors.

This time, I could barely walk my ankles, knees, and hips screamed with pain. An injection temporarily relieved it, but the rheumatologist ordered 13 more tests (KSh 79,998). Broke and desperate, I wept until an angelic friend covered the bill (total: KSh98,398).

A week later, 12 tests were negative, but one revealed the truth: Behçet’s disease, a rare, incurable condition requiring lifelong flare-up management. Seven months, KSh423,148, and stress later, I finally had a diagnosis. Some days are good; others are unbearable. Now, I aim to raise awareness. If you know anyone with Behçet’s, please reach out.