When British father Matthew Parkes took his wife Pamela and daughter Sophia on an anniversary holiday to Majorca, Spain last year, he got much more than he’d ever bargained for.

What started as a sore throat quickly cascaded into a full-blown medical emergency as Matthew developed pneumonia and organ failure. His hands became swollen and purple, and his legs turned black from circulation problems. After being placed in a medically induced coma in a Spanish hospital, doctors told Pamela her husband had only days to live.

Matthew’s story made headlines in the UK last fall because his hometown Manchester hospital had no beds to accommodate him, but it also threw a spotlight on his initial diagnosis of Castleman’s disease.

As newspapers recounted the family’s ordeal of being stranded in Spain while fighting to be transferred home, they also offered many readers their first introduction to this rare lymph node disease that shares many similarities with lymphoma.

While that initial diagnosis was ultimately incorrect—doctors now think Matthew had a streptococcal infection—it did highlight how little Castleman’s is known or understood.

According to the American Cancer Society, some Castleman’s cases can be blamed at least in part on viral infections like HIV, human herpesvirus-8 (HHV-8), or Kaposi sarcoma herpesvirus (KSHV).

But there’s still a lot scientists don’t know about the disease, and there isn’t even a universal way of classifying it—though many doctors look at whether the disease is localized in a single group of lymph nodes or spread out over multiple groups of lymph nodes.

It’s easy to see why doctors would have mistaken Matthew’s condition for Castleman’s: The way his body reacted to the infection would have been similar to the way patients would react if their immune systems had been weakened by Castleman’s.

Fortunately, Matthew’s story has a happy ending. His wife Pamela fought to get him transferred home to Manchester, and he eventually came out of his coma and was able to come home in time for Christmas.

Although doctors had to amputate both his legs, Matthew is happy to be alive and grateful to his wife and everyone else who fought for him.

All of us at PatientWorthy are delighted to hear Matthew is on the mend, too. While we’d never wish what he went through on anyone, we do hope that his experience helps people remember Castleman’s disease and the unfinished work of fighting it.

Want to do your part to fight Castleman’s disease? Check out the Castleman Disease Collaborative Network at www.cdcn.org to learn more!