Hard to Hear, Better to Know

Before falling ill, Mac* was an incredibly active person. He enjoyed participating in biathlons, scuba diving, and adventurous traveling, just to name a few.

In October of 1996, Mac traveled from Victoria Falls to the south of France and then to Cancun and somewhere along the way, he contracted a virus and began feeling constantly fatigued.

He was diagnosed with a low-functioning thyroid and received treatment which helped, but did not completely alleviate his symptoms.

Later, his diagnosis was changed to chronic fatigue syndrome, but something still didn’t feel right.

Then, in 1997, Mac was diving in Sinai, Israel when he suddenly had no strength and had to be carried back to shore. It was at this point that he feared that something else, beyond chronic fatigue syndrome, was going on.

For 19 years, Mac’s symptoms of severe fatigue continued and increased in severity. He saw at least five different doctors, accrued over $10,000 in medical bills, and endured countless tests. He tried everything from changing his diet and exercise regimes, to eliminating caffeine then, to consuming lots of it, resting and then being highly active, but no relief was found.

Mac’s daughter, Lily* was at the end of her rope and decided to take matters into her own hands. She had heard of CrowdMed on ReplyAll and decided to give it a shot.

She uploaded her fathers case and in just 43 days, she received what was later confirmed by the Mayo Clinic as the correct diagnosis:  Chronic Myelomonocytic Leukemia (CML).

“I’m sure it would have taken even less time if I had not been acting as the go-between for my father,” notes Lily, “CrowdMed was so great, so easy and not as painful or intrusive as the traditional healthcare system.”

“I know it sounds weird but the process was almost fun” remembers Lily. “Throughout the experience, I was really appreciative of the respectful tone of the detectives. They never spoke down to me, they always took care to explain their thinking in terms I could understand. And they always respected that there was a real person on the other end. Even when the diagnosis turned out to be something really scary–no one likes hearing the “c” word when it comes to their father — the news was delivered in a very supportive, comforting manner that really made a difference in how I was able to receive it.”

When the CML diagnosis was confirmed, Lily’s mom said to her that having the news from CrowdMed first helped prepare her for the news when it came from the Mayo Clinic.

It was Mac’s winning detective that delivered his motivation to fight through this disease and know that there was hope: “I know this diagnosis sounds scary,” he had written, “but there are treatments available and it’s important that you seek care as soon as possible.”

And in fact, Mac is thriving under treatment.

“Something will kill me, but it’s not going to be this,” commented Mac about his illness.

CrowdMed prides itself on getting patient’s the answers they are desperately looking for, and while the answer is not always an easy one to hear, it offers so much well-deserved relief and a clear path to healing.

Are you or a loved on suffering from an undiagnosed condition? Learn more about how CrowdMed can help here.

*Names have been changed to protect patient and their families’ s identity