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. 

28 thoughts on “September is Achalasia Awareness Month: How Will You Spread Awareness?”

  1. kim says:

    My husband has been affected by thethis for 30 years

  2. Alma C says:

    I remember when I was in the 6th grade I thought it was strange that everytime I would eat I would feel like throwing up afterwards. I would always have to get up after eating or even while I was eating to go to the restroom & force my food down. I thought something was wrong with me, at first it was only solids that I had difficulty swallowing then it also became difficult to swallow liquids as well. I didn’t know what was going on I started believing that I was sick that I was forcing myself to throw up. I had never told anyone because I was afraid of my family thinking I was bulimic. When I turned 15 I went to the hospital & the doctor listened to me & ran some test & told me it was alchalasia, later on they did a balloon procedure in my esophagus which didn’t work at all because of financial reasons I wasn’t able to get the help I needed. Now that I am 20 years old I am finally getting the help I need, & although I have to do the exams again & I know it will still take time, I feel like this is literally a light to a dark tunnel. Knowing that I will be able to finally sit through a meal without having to excuse myself, or I can go out & eat without worrying that I can’t eat in the car or at a festival without having to go to the restroom is the best feeling I have ever had.

  3. So happy to hear that you are getting the help you need!

  4. lydia holmes says:

    I have only been diagnosed with achalasia in the last year after suffering with various side affects for 3 years gradually getting worse. .
    It such a relief to find there are others that suffer too .Just to see that it’s not all in my head and I’m not making it up as people around me seem to think even my work don’t really beleive me

  5. Curtis Reneau says:

    I was recently diagnosed with achalasia after many years of pain and suffering. I’ve been misdiagnosed with anxiety disorders, GERD, etc. After losing nearly 100 pounds in just 4 months, I found a doctor who took me seriously and got me properly diagnosed. I am now scheduled for corrective surgery in just 12 short days! It has been a hell of a journey, but I’m glad it is nearing an end finally.

  6. Tomika says:

    I was diagnosed September 2011. I had no idea what was going on when it took me 5 hours to eat a cheese burger. I lost 30lbs in 5 months. I currently have botox to keep my esophagus open. Its been 2 years since I had the botox and I also suffer from spasms.

  7. Dog lover says:

    Achalashia doesn’t cause pain I know because I had it.

  8. john loversidge says:

    It sucks believe me

  9. Annie Oborn says:

    I was diagnosed july 2014. I had zero motility and after my weight fell below 50 kg was booked in for surgery as my disease had managed to prevent any food from being consumed.
    Im now 6 weeks post opp and are experiencing very little symptoms. If not for this disease being detected when it had i would still be trying to comprehend why my body seemed to have such difficulty with eating and drinking.

  10. Annie, so happy to hear you are doing well and that you were diagnosed so readily. Unfortunately so many sufferers aren’t diagnosed for years! We hope you will join us in raising awareness. AAO

  11. Hi Tomika, We are so happy you found us!. Spasms are the bear of Achalasia and are often quite difficult to manage. We understand the debilitating pain and are in the midst of compiling a list of suggestions from our members on how to get ahead of the pain so it doesn’t take hold. The #1 question people ask is how to manage them. Unfortunately there are no simple answers but some suggestions were recently discussed on our facebook page. Best to you

  12. Rhonda says:

    I was diagnosed in May 2015 after having symptoms for 6 1/2 – 7 months. I had Heller Myotomy surgery June 9th. Dr’s in Memphis, TN had no problem diagnosing me. My surgeon told me he had performed this procedure hundreds of times. In fact, the week prior to my surgery he performed this same surgery on another patient. My gastro guy was very familiar with achalasia as well as the tech who performed my manometry and 24 hour impedance test. I was surprised at their awareness given all the things I had read. I had to wait 3 weeks for surgery. I was off solids while waiting and liquids were difficult to swallow as well. I lost 28 lbs in about 6-8 weeks. Since surgery last week, I am able to swallow solids again. Mashed potatoes and green peas taste amazingly good! Praying my progress continues. Feeling blessed.

  13. Andre says:

    I have had symptoms for a year now, the first half of which I was treated for GERD. In total I’ve lost 60 lbs and have been on a liquid diet for about 3 months but now I am having difficulty swallowing fluids.

    My surgery is scheduled for August 12th, but my Dr. has warned me that there is a chance I might not be able to eat solid foods again, due to the severity of my disease. Not being able to eat has had a surprising emotional effect that I didn’t expect. So much of our social existence revolves around food and its preparation.

    I now dream of eating juicy steaks and stringy cheese on crisp thin crusted pepperoni pizza. I am hopeful that my surgery will be a success and I promise to never take the simple pleasure of eating for granted ever again.

  14. Andre, Wishing you the very best with your upcoming surgery. There is no question we are a food driven society. But remember to take it slow in re-introducing solids. We hope we can be of some support to you in your recovery. Best, AAO

  15. Rhonda how amazingly lucky you were to have found a knowledgeable doctor! Congratulations on your quick diagnosis and surgery. We have come very far in the 26 years since I first began having symptoms but we have so much farther to go. We hope that in the future no patient need ever go undiagnosed, in pain or distress and one day we may have a cure! Perhaps you would be willing to share the names of your providers so as to help others in your area. Best with your recovery!! Nancy

  16. Robert says:

    I was diagnosed when i was in the forth grade, so i couldn’t of been more than 9…maybe 10. It completely changed who i was. I used to be the class clown and loved having the attention on me but than i became terrified of anyone finding out there was something ‘wrong’ with me. I spent the next 11 years making sure bathrooms werent occupied or there was a trashcan nearby whenever i ate. I would never eat lunch at school to avoid people finding out and i would avoiding eating dinner at my friends house which was pretty hard since i was over their house literally everyday for 7years. Im 5’2 and struggled to get over 85lbs all the way up to my surgery but even now its hard to get past 100.

    I ended up having surgery on my 21st birthday and it was the greatest gift i could have gotten. It was impossible for me to remember what it was like to swallow something normally but then to be able to drink a glass of water without any trouble….i almost wanted to cry.

    Im 25 now and things are looking up. I can pretty much eat anything i want to now aslong as im drinking something to help wash it down. I still have some trouble with meat/chicken and ice cream so i need to be a bit more attentive with those. But i also get some god awful heartburn whenever i drink something acidic or with caffeine beforegoing to bed or right after getting up. In addition to tums, i’ve found peppermints and pickles work well to get rid of the heartburn.

  17. Hi Robert! We are so happy to hear you are doing well and are once again able to enjoy food and be who you really are. Yes, this disease can rob you of much. To have to contend with such adversity at such a tender age is heartbreaking! Not to mention that you felt you had to hide from your fellow classmates and your life! We must not let Achalasia go undiagnosed for so long and your story is proof to why awareness is so very, very important. Thank you for sharing your story. Best to you, AAO

  18. Tim Cannon says:

    I have/had 3rd stage achalasia, I had a Heller Myotome done at Cleveland clinic 2-3 yrs ago by Dr. Rice,, I think it is becoming active again, (need to go back) water shots out now, though I can still get food through, a lot of puree type foods,, one of my favorite is pureed asparagus with brown rice and quinoa wrapped in a thin layer of filo dough and and with a white sauce made with almond milk.
    pre cook and puree the asparagus add cooked rice and quinoa, little cheese wrapped up and baked till film is brown,, add cause and serve!

  19. Ashley says:

    Hi I was diagnosis with Achalasia at 21 my doctors couldn’t figure out what was the problem was until a year later after doing many tests to figure out. I lost 40 lbs in a year, I havnt realize how sick i was until my own mother told me that i was losing weight i didnt believe her until i try on my clothes it was so bagging on me that i had to wear a belt with everything I wear. I stop going to a doctor almost a year because I got tired going back an forth to different doctor appointment . I have so comfortable in my new body but the one i miss alot was eating so 2 year later at 23. I went back to the doctor to hope to get this fix and plus I was getting the worse heartburn that was last 4 days and nothing would works. As I went back I find out I was at stage 2 of Achalasia and that my illiness have a name. I was told I have to do surgery I was very nervous because this was my first surgery ever. I have got a Heller Myotomy in October 2015 my doctor told me I was the first patient that he met that had my condition and I was young. After my surgery I was still going through with the heartburn But it stop and I was able to eat again within December I gain my Weight. But when eat my food I always have to have a drink to make my food go down smoothly

  20. antoinette mac roberts says:

    i am diagnosed with Gerd had my esorphargus stretched a few times. lately i am having trouble with soft bread and drinking. it gets stuck and i sneeze about ten times then the food comes up with a lot of mucus. i sometimes feel like a heart attack. i would like some information thank you

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  22. Simi says:

    Hi, I was diagnosed at age 20 but I have been having symptoms since I know myself. I’m 37 and had three heller myotomy, Botox and three balloon dilations. It’s an ongoing struggle

  23. Barry says:

    I have just been diagnosed with Achalasia after 2 years of reflux symptoms gradually getting worse.

    Since November I haven’t been able to eat a solid meal and even water can be a struggle.

    I’m waiting on a date for a esophageal manometry test and then I will have surgery. Hopefully that will relieve my symptoms and can start eating solids again.

  24. Lindella Thompson says:

    Hi Robert I am so new to this my son has just been diagnosed wit this and he is 7 it has changed him in so many ways…. he is getting surgery next month and I am so happy and nervous…. I’m glad to hear all is well with you now and can’t wait for my son to back to a normal kid again!!!

  25. Bev M says:

    Is anyone aware of familial traits of achalasia? My mother always had swallowing problems (pills, etc.) and a fear of choking to death on a pill (and died at age 87 having lost her swallowing ability). I have 2 sisters (ages 63 and 70) who have had their esophaguses stretched, one of whom was recently diagnosed with achalasia. I (age 67) have food-swallowing problems frequently but not all the time.

  26. GG says:

    Hello my name is GG…I have Achalasia since 2003 and been suffering every since. ..Though I’ve learned to maintain a good weight and learned how to focis while I eat and drink I still go through this disease …

  27. 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.

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