September is Achalasia Awareness Month: How Will You Spread Awareness?

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. 

Filed Under: Awareness, Community Events, Rare Community


Global Genes Comments

  1. Hazel Yeardley says:

    My first very painful spasm was in 2012 when I was rushed to hospital with suspected heart attack However test revealed my heart was in perfect condition. Further tests were performed where it was found I had gall stones so my gall bladder was removed and I thought that was the solution, however 2 months after surgery once more had severe chest pain and was taken to A&E once again – but no cause was found. The third episode was last December when once again I was taken to hospital because the medics used the trinitrate spray under my tongue which gave almost immediate relief which once more suggested to them a heart attack – but following tests I was told my heart was fine. I did ask a Dr why the spray gave immediate relief and he suggested it was a muscle relaxant and therefore impacted on my hiatal hernia which they now suggested might be the problem. I asked if he would prescribe the spray but he declined. However I have bought some online and this gave immediate relief when I had a further spasm on 30th January – 6 weeks after the previous on – so they are getting closer. To cut a long story short, I decided to pay for tests privately and had a barium swallow which suggests Achalasia and I am now waiting for a Manometry to confirm. The trinitrate spray has been a Godsend in the last two spasm episodes as it is a muscle relaxant, so perhaps this information may help other sufferers. Good luck to you all out there.

Speak Your Mind



Follow us on Twitter