Alpha 1 & Emphysema

[linda/mi]

Hi, I'm Linda. I'm 56 years old. I was diagnosed with Alpha 1 Antitrypsin Deficiency and Emphysema three years ago. I am getting augmentation therapy once a week. I'm am very interested is stem cell research. Will they treat Emphysema & Alpha 1 Antitrypsin Deficiency?

 

[barbara]

Alpha's

Linda - I posed this question to the doctor that treated me. He said that those with your condition would benefit from stem cell treatment. Not everyone benefits to the same degree, but this would be one thing that I would insist on clarifying with any doctor or company that you would seek treatment from. It is a good idea to have a list of questions made up in advance so that when you can discuss this with a doctor or company representative, you will remember to ask the things that are important to you. If a company does not allow you to consult with a doctor or representative, then I wouldn't have any treatment done there. Are there any Alpha's out there that have had treatment?

 

[viv1314]

Alpha 1 Antitrypsin Deficiency and Emphysema

Hi, I'm Linda. I'm 56 years old. I was diagnosed with Alpha 1 Antitrypsin Deficiency and Emphysema three years ago. I am getting augmentation therapy once a week. I'm am very interested is stem cell research. Will they treat Emphysema & Alpha 1 Antitrypsin Deficiency?

Hi Linda

I'm Vivian, I'm 52 years old, I was diagnosed with Alpha 1 Antitrypsin Deficiency and Emphysema 11 years ago. I have been getting augmentation therapy once a week for the past 8 years. This past October I was put on oxygen pretty much 24/7. I am presently being evaluated for a double lung transplant in the near future. I am also very interested in stem cell research. I just learned of this through my son. I was getting myself familiar with the site when I came across you, any advice or knowledge you can share would be greatly appreciated. I'm not sure if this is the best way to contact you.

 

[barbara]

Alpha 1

Hi Viv,

Alpha 1 is treatable with umbilical cord stem cell therapy. The doctor where I went told me this. I wish you would read Tony's post. He has had a lung transplant and his post was very moving to me. To find Tony's post, you can go to members list, click on T, then Tony and read what he has posted. To contact Linda privately, you can do the same and them send her an e-mail or private message from there. However, if it is something we can all learn from, we do ask that you post on the open forum. You do need to be logged in to send messages. Bev was also considering a transplant and is now scheduled for umbilical cord stem cell treatment next month. I personally would try stem cell therapy before committing to a lung transplant. We also have a thread under pulmonary devoted to transplant and LVRS. If you have any problems navigating the forum, please ask a question under Forum 101. We don't want anyone getting lost on here! I hope this helps. I am not an alpha, but I am a Pioneer.