Alpha-1 Foundation
Alpha-1 Foundation
  • Видео 74
  • Просмотров 36 479
Advanced Alpha-1 Publications and Studies
25th Annual Alpha-1 National Education Conference - Miami. FL
Friday, June 24th, 2016
Speaker: Adam Wanner, MD, Scientific Director, Alpha-1 Foundation
Просмотров: 295

Видео

Alpha-1 Antitrypsin Deficiency 101: Lung
Просмотров 4 тыс.8 лет назад
25th Annual Alpha-1 National Education Conference - Miami. FL Friday, June 24th, 2016 Speaker: Mark Brantly, MD, Professor of Medicine, Molecular Genetics and Microbiology, Division of Pulmonary, Critical Care & Sleep Medicine, University of Florida College of Medicine
Alpha-1 Antitrypsin Deficiency 101: Liver
Просмотров 6 тыс.8 лет назад
25th Annual Alpha-1 National Education Conference - Miami. FL Friday, June 24th, 2016 Speaker: Virginia Clark, MD, Associate Program Director, Transplant Hepatology Fellowship, Assistant Professor of Medicine, Division of Gastroenterology, Hepatology, and Nutrition, University of Florida
Track 3: Honor my Decisions
Просмотров 1068 лет назад
25th Annual Alpha-1 National Education Conference - Miami. FL Saturday, June 25th, 2016 Speaker: Ray Moseley, PhD, Bioethics, Law and Medical Professionalism, University of Florida College of Medicine and Steven Jackson, CEO of Honor my Decisions
Alpha-1 Exacerbations, Preventions, & Pulmonary Rehab
Просмотров 2288 лет назад
Alpha-1 Education Day, Denver, CO - Aug 6, 2016 Speaker: Karina A. Serban, MD, Assistant Professor, Department of Medicine, Division of Pulmonary, National Jewish Health
Alpha-1 New Clinical Studies
Просмотров 2248 лет назад
Alpha-1 Education Day, Denver, CO - Aug 6, 2016 Speaker: Nabeel Y. Hamzeh, MD, FCCP, Associate Professor, Department of Medicine, Division of Environmental & Occupational Health Sciences, Sarcoidosis Program, National Jewish Health
Alpha-1 and Tobacco, E-Cigarettes, and Marijuana
Просмотров 2228 лет назад
Alpha-1 Education Day, Denver, CO - Aug 6, 2016 Speaker: Robert Sandhaus, MD, PhD, FCCP, Clinical Director, Alpha-1 Foundation; Executive Vice President, AlphaNet; Professor of Medicine, National Jewish Health
Alpha-1 Genetics/Epigenetics
Просмотров 2998 лет назад
Alpha-1 Education Day, Denver, CO - Aug. 6, 2016 Speaker: Brian P. O'Connor, PhD, Assistant Professor, Office of Academic Affairs, Center for Genes, Environment, and Health, Department of Pediatrics, Division of Cell Biology, National Jewish Health
Surgical Treatment of Alpha-1 Lung Disease
Просмотров 3318 лет назад
Alpha-1 Education Day, Denver, CO - Aug 6, 2016 Speaker: Martin Zamora, MD, Professor of Medicine, Medical Director, Lung Transplant Program, University of Colorado School of Medicine, Division of Pulmonary Science & Critical Care Medicine and Colorado Center for Transplantation Care
Timely Topics: Peer Guide Experiences
Просмотров 278 лет назад
Timely Topics Virtual Support Group Telecall - August 2, 2016 Peer Guide Experiences Speaker: Cathey Horsak, Director of Community Programs, Alpha-1 Foundation
Alpha-101: Lung & Liver Disease
Просмотров 3438 лет назад
Alpha-1 Education Day, Denver, CO - Aug 6, 2016 Speaker: Irina Petrache, Chief, Division of Pulmonary, Critical Care & Sleep Medicine, Professor of Medicine, Department of Medicine, National Jewish Health
Preparing for a Lung Transplant
Просмотров 7928 лет назад
Cesar Keller, M.D. Conference 2010
Family Experiencces & Alpha-1 Awareness
Просмотров 1308 лет назад
2011 Charleston Alpha-1 Education Day November 5, 2011 Speaker: Dawn McGee, MS, CGC, Alpha-1 Association Genetic Counseling Program
Overview of Alpha-1 Antitrypsin Deficiency - Newly Diagnosed & First Time Attendees
Просмотров 2,2 тыс.8 лет назад
Mark L. Brantly, M.D. 2010 Conference
Rare Manifestations of Alpha-1
Просмотров 2 тыс.8 лет назад
Michael Campos, M.D. Conference 2010
The Importance of Physical Activity
Просмотров 1698 лет назад
The Importance of Physical Activity
Who Should Be Tested for Alpha 1
Просмотров 1468 лет назад
Who Should Be Tested for Alpha 1
Alpha 1 Researchers
Просмотров 508 лет назад
Alpha 1 Researchers
Robert Stockley 50 years Discovery and Scientific Research Progress
Просмотров 608 лет назад
Robert Stockley 50 years Discovery and Scientific Research Progress
Importance of Pulmonary Rehab
Просмотров 1148 лет назад
Importance of Pulmonary Rehab
Family Testing & Basic Genetics of Alpha 1
Просмотров 548 лет назад
Family Testing & Basic Genetics of Alpha 1
Psychological Aspects of Living with a Chronic Disorder
Просмотров 658 лет назад
Psychological Aspects of Living with a Chronic Disorder
Nutrition for Alphas
Просмотров 458 лет назад
Nutrition for Alphas
Alpha 1 Liver Disease in Adults & Children and Liver Research Update
Просмотров 1978 лет назад
Alpha 1 Liver Disease in Adults & Children and Liver Research Update
Alpha 1 Lung Disease Bronchiectasis & Allergies
Просмотров 1,4 тыс.8 лет назад
Alpha 1 Lung Disease Bronchiectasis & Allergies
Alpha-1 Liver Disease
Просмотров 4968 лет назад
Alpha-1 Liver Disease
Alpha-1 101: What Every Patient Needs to Know
Просмотров 858 лет назад
Alpha-1 101: What Every Patient Needs to Know
Alpha-1 Foundation Update - Milwaukee
Просмотров 198 лет назад
Alpha-1 Foundation Update - Milwaukee
Heroes Happen Every Day
Просмотров 208 лет назад
Heroes Happen Every Day
Join us in Miami! 2016 Alpha 1 National Education Conference
Просмотров 138 лет назад
Join us in Miami! 2016 Alpha 1 National Education Conference

Комментарии

  • @larryhewitt1078
    @larryhewitt1078 2 дня назад

    I was diagnosed with Apha one 3 years ago when I was 62 yrs old. I have been having infusion therapy for 2yrs now.

  • @pamnewton2160
    @pamnewton2160 2 месяца назад

    Well delivered information for the person with Alpha 1. Not as clinical as most sites so easier to understand!

  • @jmt2401
    @jmt2401 5 месяцев назад

    This was an excellent presentation. I’m very grateful I found it. Thank you to the doctor.

  • @debbiewalters8606
    @debbiewalters8606 Год назад

    I am a ZZ carrier since I was 42 am now 62. I need to know where to go to hear a video of a Alpha 1 breath sounds at. Thank you ❤

  • @michellemuniz1651
    @michellemuniz1651 2 года назад

    Yes I have alpha one is in my family games I'm full bloated

  • @JesusIsKing12334
    @JesusIsKing12334 2 года назад

    Thank you for sharing this information. All things are possible through Christ

  • @rachaelweeks_84
    @rachaelweeks_84 2 года назад

    My results were 80 MM... is that normal? Lab corp was the lab I went to. On the report it said the 80 is low, but the MM was normal?

  • @martinasmith1035
    @martinasmith1035 2 года назад

    My husband was diagnosed with Alpha 1 three years ago liver affected, received new liver in April of 2022

  • @RachelPaora
    @RachelPaora 2 года назад

    I have no idea what this is I'm kinda freaking myself out I was testicles yesterday and my dr texted to get tested again to make sure 😭

  • @rebeccadoss1638
    @rebeccadoss1638 2 года назад

    23&me says I have the gene

  • @greggaschuetz7716
    @greggaschuetz7716 2 года назад

    I see cystic fibrosis on the list but it's never explained why that's associated with Alpha One and if it did I did not catch that part no matter how many times I rewound at the end. I'm looking for information about if being a carrier for alpha-1 would enhance cystic fibrosis complications and would cause more lung infections

  • @commonsense8334
    @commonsense8334 3 года назад

    I am a carrier as well. MZ. I always had wheezing and lung compromises all my life. You basically have to be your own doctor. Find an open minded doctor. It’s hard I know. I hope your doing well. 🙏

  • @tmross4
    @tmross4 3 года назад

    I am supposedly an AATD carrier (PI*S). However, I have always had problems with respiratory problems. When I was about 35 yo I was diagnosed with intrinsic asthma (all allergy tests were negative x3). I am still producing some antirypsin. However, I now have NAFLD, and irreversible COPD. I am now 59, and feel like none of my health providers will listen to me. I have never smoked, but both my parents were heavy smokers. I feel like I have the actual disorder.

    • @carolreid1473
      @carolreid1473 8 месяцев назад

      You seem to. Carriers often do have severe and sadly often untreated or undertreated symptoms, illness, and disorders. When the disorder is severe, and a person is a Pi-ZZ, it's hard to ignore, yet an MZ, SS, MS, etc. can have just as severe signs and symptoms and additionally have not only lung disease, but are higher risk for liver failure as well. Yes, some doctors ignore this as they simply don't keep up or are simply lazy. In these cases, patients suffer, usually for many years, as damage is done to their bodies wind up more severely damaged, as they are neglected. Sometimes, a doctor will make an error and give an Alpha-1 medication that isn't compatible with Alpha-1s, and it may cause acute liver failure, which can cause multi-organ damage and/or failure. If your doctor isn't listening to you, find another doctor. If you aren't communicating with your doctor well, or he or she will not refer you out to a specialist for the care that Alpha-1s require, find another doctor! You might contact the Alpha-1 Foundation and get an appointment with the specialist nearest to you. Sadly, there are many doctors who are ignorant and need an education. I hope you get the care you deserve. The Alpha-1 Foundation is a great resource, and although the liver and lung issues are the most talked about, there are other organs affected as well. In children, there seems to be swelling in the eyes, sometimes around the retinas, which can result in blindness, there are chronic pain syndromes that are rarely addressed, and so on. More research needs to be done.

  • @barefootbeachgirl4299
    @barefootbeachgirl4299 3 года назад

    I have this and I'm 24. I'm very scared😔

    • @DeeBoss84
      @DeeBoss84 2 года назад

      I’m being tested for it and I’m 35.. I’m scared too. How are you doing now?

  • @georgeinangelo6291
    @georgeinangelo6291 3 года назад

    Very nice . I have alpha 1 with ZZ

  • @yvonnemccullaghward361
    @yvonnemccullaghward361 3 года назад

    Just heard about this genetic mutation and researching it as my sister has it.Why would doctors know she jhas it but not tell her.She is fatigued all the time and this could be why !!

  • @Wales-forever
    @Wales-forever 4 года назад

    This is the best educational information on alpha 1 antitrypsin deficiency that I've found. Easy to follow and very well explained. Thank you. I don't know why it hasn't got many likes either, unless people searching for information are alpha 1 deficient themselves and being such a rare disease? 🤷‍♀️

  • @horbaxtomero7907
    @horbaxtomero7907 4 года назад

    Knowing about Dr Madida on RUclips was a life turn around for me because my chronic Parkinson Disease of over 6 years now was just cure in few weeks with Dr Madida herbal medicine .

  • @jackieswan422
    @jackieswan422 5 лет назад

    Yeah probably, but we know more about liver, lungs and kidneys

  • @barbiekat6887
    @barbiekat6887 5 лет назад

    I am surprised and sorry there are not more comments and likes to this presentation! My own doctors argue with me when I express to them that Alpha 1 can also manifest in other conditions like arthritis - or at least make other conditions worse...

  • @kyfarm
    @kyfarm 6 лет назад

    This has been up for 2 years, and no comments...

  • @silentecho8329
    @silentecho8329 7 лет назад

    Thank You for what you do.

  • @bretbecky711
    @bretbecky711 8 лет назад

    Thanks for uploading!! My 48 year old female, [lifetime] friend was just diagnosed. Her doctor brought up the possibility of her needing a lung transplant. Her dad (Deceased) was a heavy drinker/smoker his entire life. My sick friend also smoked and drank. She quit smoking almost a year ago. Since the liver is affected in this disease, could the long term drinking by her and her dad have played a role in her getting this disease? Will Liver repairing foods help at all? Vitamins, herbs, cardio exercise? By the way, she's been very trim all of her life, now she's pushing 180+ lbs. Could Alpha 1 Antitrypsin deficiency have cause her sudden weight gain? Can you recommend anything at all that might slow down the progression or even reverse this disease, even if it's a long shot? Thank you....Bret Walker

  • @alphaonefoundation
    @alphaonefoundation 13 лет назад

    That's interesting. Do you know Robert?

  • @AlecWyld
    @AlecWyld 13 лет назад

    ...my last name is Minello...

  • @clintmuzik1
    @clintmuzik1 13 лет назад

    Leana, You're so courageous! An excellent spokesperson!