September is a particularly exciting month for Nancy Lazarus, founder of the Achalasia Awareness Organization
. Lazarus was diagnosed in 1996 after suffering from the disease for 8 years prior, she felt it was important that others not experience what she had gone through.
“I was dismissed so many times as just having heartburn, accused of having taken drugs when I passed out in an ER and otherwise just ignored until I could no longer even swallow water,” says the AAO Founder, “I weighed 100 pounds at 5’5″ and my skin was grey. I had spasms that brought me to tears and had me doubled over in agony.”
The entire concept behind AAO is that since they are a small community, it behooves each patient to do their part to raise awareness. The organization suggests that by contacting local papers, setting up ‘meetup’ groups, putting up flyers in hospitals, etc, they can make an individual impact on the level of awareness of this disease in their community.
AAO recently had a webchat with Cleveland Clinic Doctors: Raja and Gabbard. And there is a list on their Facebook page of the top 10 things we have accomplished in our short history.
What is Achalasia?
Achalasia is a rare, incurable and progressive esophageal motility disease with only palliative treatment. Achalasia sufferers have damage to the nerves of the esophagus which makes swallowing and the passing of food and liquid into the stomach extremely difficult. It is of unknown etiology.
Within the diagnosis of Achalasia there are three types, l, ll and lll, which compounds its complexity. Approximately 1 in 100,000 people in the US suffer from this disease. With a population of approximately 345,000,000 people, that translates to a few thousand sufferers. To add to the frustration of this disease, most doctors will never see a case of it in their entire careers. Thus it is most often misdiagnosed causing years of pain and struggle.
There is a desperate need for research and awareness to bring this disease to the public and in turn to medical personnel so that those with Achalasia can procure timely diagnosis and treatment.
Learn more about how you can make a difference by contacting the organization here.