Tuesday, April 21, 2009

I got me a brand-new chronic incurable disease - yay

Here is a video update...in a nutshell, I got sick and had something that resembled a stroke. Doctor has a feeling it wasn't, but getting tests anyway. He does not feel the diet or exercise caused it either - he thinks if anything they are helping and keeping away more serious complications.

Then my sister calls me and informs me that she has been diagnosed with an incurable chronic disease - Alpha-1 antitrypsin deficiency. This is a disease also called inherited emphysema. And, it's supposed to come on earlier and more severe than emphysema caused by smoking.

She also informs me that she got it because both our mom and dad are carriers so...I have it too!

It is a problem with our DNA. Our bodies don't produce a protein that protects our lungs and eventually it begins to attack our lungs and our livers, eventually destroying them.

I do have a lot of the symptoms - asthma (mine is induced only by illness), difficulty drawing blood, easy for respiratory illnesses to progress, etc.

He told her diet and exercise will NOT make a difference - no matter what she does. However, I've looked around the internet and it looks like many doctors recommend vegetable juices and vegetable juice fasts with flare-ups. I myself know my illnesses don't get very bad if I keep to vegetables.

I've also seen that inflammation is a component - and most raw foodies know that when you go raw, inflammation goes down. So I'm going to up my raw and see. She is younger than me and her symptoms are worse...but she does smoke a lot. So far I don't have a lot of problems unless I catch something or the weather changes.

Anyway, here's my video.


  1. Hi Bjay,
    You don't necessarily have Alpha-1 just because your sister has it. A simple blood test is the only way to know for sure. Your sister's smoking is the worst possible behavior for an Alpha, and if you don't smoke, that's great. Good diet and exercise are extremely helpful for people with Alpha-1 -- like everybody else. For lots more info, check alphaone.org.
    Bob Campbell
    Communications Manager
    Alpha-1 Foundation

    1. She had the ZZ type and was told I would have it to. I got tested, and I do indeed have it. I have been using folkish type medicine and raw food, and I no longer need my inhalers or breathing treatments. I haven't had a respiratory issue for years. Knocking on wood.

  2. I’ve come to you blog via your YouTube post and am sorry to hear about the A1AT and other problems. I was diagnosed with A1AT in 2003 at 53 years old and had no knowledge it was in my family until then. My lungs were OK, probably as I’ve never smoked but I had advanced liver cirrhosis.

    The only “cure” for the disease is to have a liver transplant as the problem originates there due to the genetic malformation of the protease inhibitor which cannot pass through the walls of the liver. Wikipedia has a full explanation.

    Others in my family had probably been wrongly diagnosed with COPD over the years when it was always AIAT.

    In 2006 I was given the gift of life by way of a liver transplant and now I’m back to full health. I have been a vegetarian and now vegan for most of my life and I have always felt my diet supplemented by all sorts of green and bitter smoothies (most bitter foods seem to be good for the liver) reduced the effects on my body of my failing liver. The big dietary change I had to make was to severely reduce my intake of salt once my liver was beginning to fail.

    This is a serious problem and I would advise you to take all the medication and treatment advised and also pursue the raw and special diet to give you the best chance of survival, I did and I’m here today. I would also advise you not to get drawn into any alternative therapy that costs you money as there are people out there who will try to take advantage of you at this venerable time. All the information and help you need is out there on the web as far as diet and lifestyle changes are concerned.

    My thoughts are with you, your sister and your family.

  3. Thank you very much Howard. Did you do the transfusions? My sister and I read that the risk of hepatitis is high with that. I'm still waiting on my test . :( I will have my sister read your comment. Thanks again!

  4. What happened to you, Bjay? Are you okay? How is your sister? We all out here in cyber space, worry about you. Please post update, thank you so much. We hope and pray all is well with you and your sister.

    1. Sorry took so long to get back to this blog! I have been doing well. Been having good experiences with being mostly raw, green juices, and some folk medicine teas.

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