What would you do if you had a disease so rare that you went weeks or months without a diagnosis?
What would you do if after your diagnosis, you told your new doctor what you had, and he or she left the room to look it up?
What would you do?
For those of you who have faced this recently, you thank your lucky stars for living in the Information Age. A young Croatian woman by the name of Vlatka did exactly that. With the help of the internet, she found her diagnosis of Castleman’s disease and it changed her life.
Vlatka spent the first 24 years of her life quite healthy. She can’t remember any specific medical problems from her childhood of note. However, that all changed when a sequence of events landed her in the equivalent of a cardiac intensive care unit in her native Croatia.
The doctors told her she had a tumor on her heart. Only after months of differing opinions from a multitude of doctors did she finally consent to the surgery that would lead to her eventual diagnosis of Castleman’s disease.
Castleman’s disease is a lymphatic disorder that causes the unusual cell growth and tumors in various parts of the body. The symptoms are difficult to differentiate from other lymphatic disorders. Surgical and pharmaceutical treatment options are available for the different types of the disease.
Vlatka did not turn to the Internet right away after her diagnosis of Castleman’s.
Instead, she consulted with various doctors, who frequently told her that they didn’t know anything about it. The doctors who did know something about it told her little more than it’s a rare disease.
Eventually, this young woman decided to post online to see what the World Wide Web could give her. She says she has lots of questions, but she hasn’t gotten the answers from her doctors. Perhaps the Internet will provide more answers.
Hopefully, people from the Castleman’s disease community will reach out to her with advice and support.