My name is Tina Middleton Chapman and I am 42 years old.  I live in New Tazewell, TN (USA), and I have Alpha 1 Antitrypsin Deficiency.  I am lung affected and I have panniculitis.  In September 2011, I started infusions therapy, and in February 2012, I had a port surgically placed  for my weekly treatments. Alpha-1 occurs when there is a lack of a protein in the blood called Alpha-1 Antitrypsin or AAT that is produced by the liver. Alpha-1 Antitrypsin deficiency can’t be diagnosed by symptoms or by a medical examination; you need to get a blood test to know for sure. There is no cure for Alpha-1 lung disease, but some treatments are available.

ATT is a condition that raises your risk for certain types of lung disease, especially if you smoke. AAT deficiency is an inherited condition. “Inherited” means it’s passed in the genes from parents to children. Some people who have severe AAT deficiency develop emphysema often when they’re only in their 40s or 50s. Emphysema is a serious lung disease in which damage to the airways makes it hard to breathe.

A small number of people who have AAT deficiency have cirrhosis and other serious liver diseases. Cirrhosis is a disease in which the liver becomes scarred. This prevents the liver from working right. In people who have AAT deficiency, cirrhosis and other liver diseases usually occur in infancy and early childhood.

A very small number of people who have AAT deficiency have a rare type of skin disease called necrotizing panniculitis. This skin disease can cause painful lumps under or on the surface of the skin. Severe patients with Alpha 1 Antitrypsin Deficiency are listed and waiting for organ transplants.

Augmentation therapy consists of intravenous infusions, usually weekly, of alpha-1 antitrypsin protein purified from healthy plasma donors. The treatments are ongoing lifelong. The goal is to increase the level of alpha-1 protein in the blood and lungs in order to slow or stop the progression of Alpha-1 lung disease.

Augmentation therapy cannot restore lost lung function and is not considered a cure. However, this therapy is currently the standard of care for Alphas with COPD/Emphysema. Augmentation therapy also appears to be an effective treatment for the Alpha-1 related skin disease necrotizing panniculitis.

I continue to hope for a cure.  For more information, visit the Alpha-1 Association.

11 thoughts on “Alpha 1 Antitrypsin Deficiency Causes Lung Disease and Panniculitis in Tina Middleton Chapman”

  1. Jackie English says:

    Good Job my Alpha sister Tina!

  2. Do you mind if I quote a couple of your articles as long as I provide credit and sources back to your site?
    My blog is in the very same niche as yours and my visitors would certainly benefit from some of the information you present here.
    Please let me know if this okay with you. Cheers!

  3. Tina Chapman says:

    It is okay too use any of mine.

  4. Janet C Roach says:

    I also have Alpha 1 Antitrypsin Deficiency with Panniculitis. You are the first person I have been able to find with panniculitis. I’m not glad you have it but at least I know I’m not alone. I’m in South Carolina. I have had a ports for infusions. I was diagnosed in 1992. Thank you for sharing your story! I can be reached on Facebook @ Janet Cleveland Roach

  5. billie says:

    My son was diagnosed w/ AAT @ birth & is currently in the hospital w/ cellulitis of his left foot. This has been very helpful. Drs havent dx him yet w? Pan. But its my guess.

  6. Janet says:

    My prayers are with your son. I have Alpha 1 with panniculitis. I currently take a pill called Dapsone and I also have IV infusions of Prolastin. My feet and legs swelled with panniculitis as well. Please let me know if I can be of help. Go to
    http://www.alpha-1foundation.org. or http://www.alphanet.org. hopefully one of these might help.

    Janet

  7. Deb says:

    I have paniculitis but don’t know if I have alpha 1 yet. I have a hypothyroid and have had both conditions since about 1976 and I’m finding it hard to get information in western Australia. I know all about the two conditions i have but not much about the alpha 1. My paniculitis flares a few times a year but haven’t pin pointed exactly when whether it’s stress related environmental or other. Any advice is well received. Thanks

  8. ndemi says:

    Am really sympathetic with you Tina and i pray that you heal soon

  9. Mike France says:

    Tina, my name is Mike I am aatd sz I have aatd panniculitis, If the statistics are correct there are only 5-10 of us in the U.S. I have been on therapy since 2009, I gave up trying to find any one else until recently on Facebook I met Nicky in the U.K. I’m not sure how many aatd people are in the world but there are not to many of us. We are starting a group on Facebook, I would like to invite you to join us. Thank You Mike

  10. Mike France says:

    Tina, we did get a Facebook group up and running alpha 1 panniculitis support group on Facebook, you can also contact me anytime Thanks Mike

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