I had no idea. They tried to tell us but I don’t think most listened. We’d become complacent. 62 tornadoes ripped through this state. A F1 went right over our house. My heart goes out to the communities that are suffering this week with these crazy storms. The thing I remember most is driving by what used to be a neighborhood and seeing just slabs…no debris, just clean slabs with maybe one wall. On one such slab was a pink plastic child’s chair. It’s etched on my brain. We came home after that trip to drop off supplies and check on some friends to cook dinner for the neighborhood on our 20+ year old Weber that listed to the left ever so slightly. That’s the other thing I’ll never forget…how our neighborhood at the time, came together to take care of each other. We cooked up the remnants of freezers and refrigerators. We gathered propane and ice for each other when it could be found. We showered in homes that had gas water heaters. We took care of one another. #where_she_blooms #howdoesyourgardengrow #gardenher #zone7b #growwhatyoueat #growwhatyoulove #abidenohatred #practiceradicalempathy #yallmeansall #liveyourtruth #alabamagardening #oldmenarentthebossofme #southernprogressive #ithrowmud #bibliophile #hellhathnofury #alpha1antitrypsindeficiency #homegrowntomatoes
Hasta un 3% de los casos de #EPOC están relacionados con el déficit de #Alfa1. Recuerda, el diagnóstico temprano mejora vidas: ¡hazte la prueba! 💪 Si tienes o conoces a alguien con #Alfa1 no estás solo/a, ¡nosotros podemos acompañarte en este camino de la mano de nuestros profesionales de la salud! Escríbenos sin costo ni compromiso a [email protected] ¡Te esperamos! 💜 #UnitedInAlpha1 #alpha1antitrypsindeficiency #alpha1 #JuntosPorLaSaludRespiratoria
According to recent studies, COPD is also now the leading cause of death among women in the United States. We're sharing some facts about COPD in women at our link in bio! #COPD #copdawareness #emphysema #alpha1antitrypsindeficiency #copdsupport
As some of you know, it’s a shit show over here. We’ve got surgeries and scary tests and big things that need fixin. We’re swimming upstream and trying to gather our pennies to pay for things. But I’ve got friends staring down very scary diseases, we’ve lost family members, I’ve lost so many freaking friends…a little boy at one of our middle schools died this week..life is fragile. Brutiful and fragile. Eat the dessert first, go to the concert, hug all the necks. The mister said “Aim, we have all this stuff we have to pay for, our plates are overflowing with things we need to do, I want to go to this show too but it’s just not very responsible” I replied “I had two babies by the time I was 21. I’ve been nothing most of my life if not responsible…it’s my turn to do shit because I want to. I want to see this show. We’re going.” I bought the tickets. Y’all…do the thing. I’m not saying do all the things…don’t throw responsibility completely out the window but do the things you can. Don’t wait to live your life later…live it today. Start right now….continued in comments. #where_she_blooms #howdoesyourgardengrow #gardenher #zone7b #growwhatyoueat #growwhatyoulove #abidenohatred #practiceradicalempathy #yallmeansall #liveyourtruth #alabamagardening #oldmenarentthebossofme #southernprogressive #ithrowmud #bibliophile #hellhathnofury #alpha1antitrypsindeficiency #homegrowntomatoes #southstar
To find vaccine recommendations for Alphas from AlphaNet's Medical Team, visit the Subscriber Portal or alphanet.org to read "New Vaccines, New Questions (Fall 2023)" located under the From Our Medical Team story category. #worldvaccineawarenessweek #alpha1antitrypsindeficiency #healthmanagement #asthma #COPD #emphysema #lungdisease #liverdisease
25 April- European Awareness Day for Alpha-1 At Alpha-1 Europe Alliance asbl we believe access to care and treatment should not be a luxury, but a fundamental right for all who need it. Without access to life-altering treatment, #alpha1 patients face decreased quality of life and increased risk of future complications. Join us in our mission to make comprehensive care accessible for all Europeans living with alpha-1. https://alpha1europe.org/ #AATD #alpha1antitrypsindeficiency #unitedforalpha1
Jährlich ist am 25. April der Alpha-1 Awareness Day! Mach gerne bei unserer Kampagne mit, die in 12 verschiedenen Sprachen übersetzt ist! Interessiert? Mehr Infos findest du auf der Website der Alpha-1 European Alliance (https://alpha1europe.org/european-alpha-1-awareness-day/) #alpha1antitrypsindeficiency #alpha1awareness #unitedforalpha1 #aatd #alpha1testing
This little guy is now 14. (Editing to add -It’s not his birthday, I just found this photo and it took my breath away so I wanted it in my grid). I stumbled on this photo the other day and it took my breath away. Time…slow down. #where_she_blooms #howdoesyourgardengrow #gardenher #zone7b #growwhatyoueat #growwhatyoulove #abidenohatred #practiceradicalempathy #yallmeansall #liveyourtruth #alabamagardening #oldmenarentthebossofme #southernprogressive #ithrowmud #bibliophile #hellhathnofury #alpha1antitrypsindeficiency #homegrowntomatoes
Protect yourself and your family from preventable diseases by getting vaccinated. Talk to your doctor about which vaccines are right for you. To find vaccine recommendations for Alphas from AlphaNet's Medical Team, visit the Subscriber Portal or alphanet.org. #worldimmunizationawarenessweek #immunization #alpha1antitrypsindeficiency #healthmanagement #asthma #COPD #emphysema #lungdisease #liverdisease
Thanks to everyone that’s donated so far as Jason had Alpha-1 antitrypsin he couldn’t get life insurance so was saving for his funeral himself, to get almost £700 in 24 hours is amazing and will take the strain off his mum in an already difficult time If you’ve already donated thank you so much, if you still want to help please donate anything you can at https://gofund.me/cf776908 (please click the link in my bio) Thanks again everyone 💔 #rip #jasonfranks #missyou #alpha1antitrypsindeficiency #alpha1 #alpha1awareness
Yesterday was mostly a shit day. I went in to my first account and found out one of my favorite people was leaving. I felt sad and tired and kinda pissed off but I carried on. At me next stop the manager was in a great mood, joking, happy and it changed MY mood immediately. Then an entire display collapsed and a part of me wanted to just walk away. But I didn’t walk away, I took a deep breath and got to work fixing it. An employee at the account walked by and said, “ you looked so defeated but then you just straightened and I knew you were going to fix it. That was pretty bad ass” and she was smiling when she walked away. We all have crap days. Sometimes crap days just are. I’m going to miss that manager that’s leaving. It was a really stupid long day of work. But please know, that you can also do hard things. Please know that the simplest things/kindnesses (calling someone a bad ass or just smiling if you feel inclined) can make someone’s entire day. Happy Hump Day! #where_she_blooms #howdoesyourgardengrow #gardenher #zone7b #growwhatyoueat #growwhatyoulove #abidenohatred #practiceradicalempathy #yallmeansall #liveyourtruth #alabamagardening #oldmenarentthebossofme #southernprogressive #ithrowmud #bibliophile #hellhathnofury #alpha1antitrypsindeficiency #homegrowntomatoes
The Social Health Awards voting is LIVE! You can now show your support for the Health Leaders who have already been nominated. Keep nominating! Nominations and voting are open until May 3!
Happy Passover! #happypassover #passover #alpha1antitrypsindeficiency #healthmanagement #asthma #COPD #emphysema #lungdisease #liverdisease
Grateful beyond words… This past weekend, I had the incredible opportunity to join the 25th anniversary Congress of Alfa-1 España. It was an honor to be invited to speak on behalf of the Alpha-1 Europe Alliance asbl, sharing our journey of collaboration, and the key role played by Alfa-1 España in shaping our Alliance’s work. The experience was truly transformative. From connecting with fellow Alphas (people living with #alpha1antitrypsindeficiency), experts and researchers, to engaging in insightful sessions on disease management and well-being, every moment was filled with empathy, inspiration and learning. A special mention to Elena Goyanes Vilar and Mariano Pastor for their warmth and hospitality, and to the entire Alfa-1 España team for organizing such a remarkable event. Your dedication to the Alpha-1 community is absolutely admirable. These days have reminded me of the important role of patient organisations, the power of connecting, of unity and of a shared purpose. I am convinced that together we are stronger and we will go further. We will all continue to advocate for better care and support for individuals living with Alpha-1. Thank you, Alfa-1 España, for the invitation and for creating an unforgettable experience. #Gratitude #Alpha1Community #TogetherStronger #aatd #alpha1awareness #unitedforalpha #raredisease #patientgroups Fenaer Pacientes FEDER ONG FNETH
Making up my weekly meds and counting my blessings. #blessed #lung #lungtransplant #alpha1antitrypsindeficiency #icanbreathe #permanentpatient #donor #donatelife #Godisgood
Alpha-1-Antitrypsin-Mangel - eine Seltene Erkrankung im Fokus Alpha-1-Antitrypsin-Mangel (kurz Alpha-1) ist eine erbliche Stoffwechselerkrankung, bei der ein Schutzeiweiß der #Lunge, das sogenannte Alpha-1-Antitrypsin, nicht oder in nicht ausreichendem Maße gebildet wird. Durch den fehlenden Schutz wird das Lungengewebe im Laufe der Jahre zersetzt. Da die Hauptsymptome des Alpha-1-Antitrypsin-Mangels auch bei anderen Erkrankungen wie #COPD oder #Asthma vorkommen, wird bei vielen Betroffenen die Krankheit lange Zeit nicht erkannt. Was dies für Betroffene bedeutet und welche wichtige Rolle die Unterstützung durch eine Patientenorganisation für Patientinnen und Patienten mit Alpha-1 spielt, erläutern zwei neue ATEMWEG Podcast-Beiträge. Hier geht es zu Teil 1 "Alpha-1-Antitrypsinmangel - ein seltenes aber bedeutsames Thema aus Betroffenenperspektive": https://t1p.de/5d4zg Quelle: Chiesi #alpha1antitrypsindeficiency #alpha1awareness #alpha1
Is augmentation therapy necessary for Alphas after a lung transplant? Find out in our latest Subscriber Portal story from AlphaNet's Medical Director Charlie Strange, MD. #alpha1antitrypsindeficiency #healthmanagement #asthma #COPD #emphysema #lungdisease #liverdisease #organtransplant #organdonation #donatelife
Living alone with COPD can be really hard, but Becky talks about how she makes it possible at our link in bio! #COPD #copdawareness #emphysema #alpha1antitrypsindeficiency #copdsupport
🌍World Liver day Everyone’s liver produces the protein alpha-1 antitrypsin (AAT). The job of AAT is to protect the body from inflammation, especially in the lungs. In people with Alpha-1 their AAT is malformed and cannot be released by their liver. Most commonly this leads to lung disease but the build-up of AAT in the liver can also lead to liver disease. AAT is produced in the liver and the AAT an alpha produces is abnormal. Unfortunately, this means that it gets stuck in the liver and cannot be released into the bloodstream. For most people, this added complication doesn’t cause many problems. However occasionally, the build-up of the faulty AAT in the liver does cause damage, leading to liver disease usually involving cirrhosis, which is scarring of the liver. Find out more at @alpha1.org.uk #worldliverday #alpha1antitrypsindeficiency #alpha1awareness #alpa1uksupport #liver #liverdisease
Get up and move! Exercise is great for your body and mind. Make a plan to get some physical activity today. To learn more about how exercise can benefit you as an Alpha, check out “Why is Exercise So Important for Alphas?” on the Subscriber Portal. #nationalexerciseday #alpha1antitrypsindeficiency #healthmanagement #asthma #COPD #emphysema #lungdisease #liverdisease
To learn about risk factors for COPD and other conditions that affect Alphas, visit bfrg.alphanet.org or the Subscriber Portal to access the Big Fat Reference Guide to Alpha-1. #alpha1antitrypsindeficiency #healthmanagement #asthma #COPD #emphysema #lungdisease #liverdisease
My leaf platters look to be cracking but time will tell. These three small pieces got a variety of glazes…should be able to do before and afters next week 💜 I’m especially curious about how the one with what looks like bacon turns out! 🤣 #where_she_blooms #howdoesyourgardengrow #gardenher #zone7b #growwhatyoueat #growwhatyoulove #abidenohatred #practiceradicalempathy #yallmeansall #liveyourtruth #alabamagardening #oldmenarentthebossofme #southernprogressive #ithrowmud #bibliophile #hellhathnofury #alpha1antitrypsindeficiency
The Social Health Awards are officially LIVE! It’s time to recognize the incredible Health Leaders who are impacting healthcare. You can now nominate Health Leaders until May 3rd!
🤷🏼♀️ Make it a good one anyway! #where_she_blooms #howdoesyourgardengrow #gardenher #zone7b #growwhatyoueat #growwhatyoulove #abidenohatred #practiceradicalempathy #yallmeansall #liveyourtruth #alabamagardening #oldmenarentthebossofme #southernprogressive #ithrowmud #bibliophile #hellhathnofury #alpha1antitrypsindeficiency
Ein weiteres Highlight vom diesjährigen DGP was das Interview mit Dr. Christoph Fisser, YoungDGP. Das ganze Interview findest du auf unserer Homepage. Es lohnt sich vorbeizuschauen :) #dgp #alpha1antitrypsindeficiency #alpha1antitrypsinmangel #youngdgp
Alpha-1 Antitrypsin Deficiency #alpha1antitrypsindeficiency #curea1 #alphanet #gettested #cslbering #grifols #takeda #geneticnondiscriminationact #alphamz
The cost of my life!!! I have been asked why I always post pictures of my infusions and thank Plasma donors. THIS IS WHY!! One month of my medication and a nurse to administer!! ONLY ONE MONTH!! Thank you Plasma donors, you give me the medicine that keeps me and others alive to see another glorious day!! #plasmadonation #alpha1warrior #costofhealthcare #keepmealive #alpha1antitrypsindeficiency #alpha1awareness #donateplasma #grateful
Here are some book reviews of “Living with Alpha-1 Antitrypsin Deficiency”💜 #livingwithalpha1 #alpha1antitrypsindeficiency #copd #emphysema #asthma #liverdisease #chronicillnesssupport #writersofinstagram #authorsofinstagram #peoplehelpingpeople #publichealth #healtheducation #advocacy #bookreviews
How can you make day-to-day life with COPD easier? We have some helpful strategies at our link in bio! #COPD #copdawareness #emphysema #alpha1antitrypsindeficiency #copdsupport
Each day brings more energy which strengthens my determination and resolve to get back to “normal “. It’s been a rough couple of weeks and this bout of illness really took its toll on me. It was also a hard lesson to accept because I know there are more trials headed my way, but if I can find ways to control my fears and anxiety, I’ll be all the better for it. Stitching, reading and talking to my children and friends have helped me to push through. I had started a couple of small sewing projects a couple weeks prior, but didn’t get to finish them until this week once my physical exhaustion had been sated. #stitching #sewing #slowstitch #sewhealing #sewtherapy #sewtherapeutic #alpha1antitrypsindeficiency
Altered Playing Card. Title: Tea Time. Enjoying a quiet moment is restorative. I used: vintage storybook pages, vintage paper, ribbon, the art studio card stock and cutout, distress ink, and Tim Holtz word strip. #arttherapy #art #timholtzaddicts #timholtzideaology #alteredplayingcards #mixedmedia #mixedmediaart #collageart #collage #vintagepaper #crafty #craftersgonnacraft #papercrafts #papercraft #artsy #layering #junkjournalart #junkjournal #junkjournals #artwithheart #hope #pain #alpha1antitrypsindeficiency #chronicillness #alpha1awareness
April is Alcohol Awareness Month -- let's raise awareness about the risks of excessive drinking and support those affected. To learn how alcohol consumption affects those with Alpha-1, visit bfrg.alphanet.org or the Subscriber Portal to access our Big Fat Reference Guide to Alpha-1. #AlcoholAwarenessMonth #alpha1antitrypsindeficiency #healthmanagement #asthma #COPD #emphysema #lungdisease #liverdisease
Altered Playing Card. Title: O Little Friend. This sweet fellow looks like he’s on a mission. I used: vintage storybook pages, vintage paper, twine, ribbon, button, the art studio cardstock, and Tim Holtz word strip. #arttherapy #art #timholtzaddicts #timholtzideaology #alteredplayingcards #mixedmedia #mixedmediaart #collageart #collage #vintagepaper #crafty #craftersgonnacraft #papercrafts #papercraft #artsy #layering #junkjournalart #junkjournal #junkjournals #artwithheart #hope #pain #alpha1antitrypsindeficiency #chronicillness #alpha1awareness
To learn about the benefits of oxygen therapy for those with COPD, please visit the Subscriber Portal to read "Is Oxygen Therapy Right for Me?" located under the Our Alpha-1 Community story category. #alpha1antitrypsindeficiency #healthmanagement #asthma #COPD #emphysema #lungdisease #liverdisease #oxygenuse
Day 3- Post Op- slow, but determined. 🤞🏼 My Alpha-1 disease complicates every little thing that happens to my body. It’s the main reason why I need to be monitored closely for anything that could hit me with an infection, because it takes my body longer to fight back, & it creates far more extraordinary issues. For instance, medicine that would help a “normal, healthy “ patient doesn’t work the same on me so the doctors have to jump through hoops trying to figure out what will. I’m being told it’s the path I’m on and all I can do is roll with the changes and the upheavals. Meantime, I do what I can to keep my body strong; Walking, eating a high protein diet, less carbs, minimizing social activities where crowds of ppl can and will make me sick, and being in tune to any new changes which might be threatening to my well being. It’s a tall order of do’s and dont’s, restricting me from living my life in the quality that I’ve become accustomed to, but in the end it’s little to pay to maintain and keep myself healthy. What’s that old saying: no risk, no reward”?! Thank you all for your love, understanding, support, prayers, encouragement and your humor. 🩷🙏🏼 Onward! 👉 #alpha1antitrypsindeficiency #livingwithalpha1 #raredisease #liverdisease #lungdisease #livingwithpain
During National Donate Life Month (NDLM), Americans are encouraged to register as organ, eye and tissue donors, and to honor those who have saved lives through the gift of donation. To learn more, please visit: donatelife.net/how-you-can-help/national-observances-celebrations #nationaldonatelifemonth #donate #alpha1antitrypsindeficiency #healthmanagement #asthma #COPD #emphysema #lungdisease #liverdisease
Another test for my AATD. This one on my liver. Just getting baselines. Have a great Monday. #where_she_blooms #howdoesyourgardengrow #gardenher #zone7b #growwhatyoueat #growwhatyoulove #abidenohatred #practiceradicalempathy #yallmeansall #liveyourtruth #alabamagardening #oldmenarentthebossofme #southernprogressive #ithrowmud #bibliophile #hellhathnofury #AATD #alpha1antitrypsindeficiency
Celebrate good health and well-being on World Health Day. To learn more about how to stay healthy and make healthy choices, please visit bfrg.alphanet.org or the Subscriber Portal to access our Big Fat Reference Guide to Alpha-1. #worldhealthday #alpha1antitrypsindeficiency #healthmanagement #asthma #COPD #emphysema #lungdisease #liverdisease
Unser persönliches Highlight vom diesjährigen DGP-Kongress in Mannheim: Prof. Dr. med. Koczulla spricht über Neues aus der Forschung zum Alpha-1-Antitrypsin-Mangel. Das Video dazu findest du auf unserer Homepage. Schau doch mal rein :) #alpha1antitrypsindeficiency #alpha1antitrypsinmangel #dgp
Take some time for you today! Practice self-care in whatever way feels best to you. #nationalselfcareday #selfcare #selfappreciation #alpha1antitrypsindeficiency #healthmanagement #asthma #COPD #emphysema #lungdisease #liverdisease
What is Third Hand Smoke? And how does it affect COPD? Head to our link in bio where John is explaining it! #COPD #copdawareness #emphysema #alpha1antitrypsindeficiency #copdsupport
We’re excited to announce that the 2024 Social Health Awards program is launching on April 15th! 🏆 Our awards program has proven to be one of the best ways to honor and celebrate the work of Health Leaders like you! Comment below with a 🎉 if you plan to nominate a Health Leader this year.
April 1st kicks off National Public Health Week, a time to celebrate the unsung heroes of public health: the healthcare workers, educators, and advocates who strive to create healthier communities for all. Let's recognize their efforts and together strive for for clean air, safe neighborhoods, nutritious food, and access to healthcare for everyone! #NPHW #alpha1antitrypsindeficiency #healthmanagement #asthma #COPD #emphysema #lungdisease #liverdisease
Welcome to spring and lighter evenings… #alpha1awareness #alpha1antitrypsindeficiency
Chronic illness, chronic pain, chronic fatigue…suck. It’s just so hard. #EhlersDanlosSyndrome #POTS #MCAS #Alpha1AntiTrypsinDeficiency #Fibromyalgia WARRIOR!!! 💪🏼
Let's celebrate Doctors' Day on March 30th and acknowledge the amazing work of doctors everywhere. They've dedicated their lives to saving lives and improving medicine. Thank you, doctors! And a special thank you to AlphaNet's own Medical Directors Robert Sandhaus, MD, and Charlie Strange, MD -- we appreciate all you to for the Alpha-1 community and beyond! #nationaldoctorsday #alpha1antitrypsindeficiency #healthmanagement #asthma #COPD #emphysema #lungdisease #liverdisease
Have you heard of respiratory devices like "ventilators," "Trilogy," "AVAPS," "BiPAP," and "CPAP"? What exactly are they, and how are they different? John, a respiratory therapist, is helping us learn more about them at our link in the bio! #COPD #copdawareness #emphysema #alpha1antitrypsindeficiency #copdsupport
Am 22. März startete die Kampagne "Allergien und Atemwege" in der Marion Wilkens (1. Vorsitzende) die Möglichkeit hatte, ihren Patientenweg mit einem Alpha-1-Antitrypsin-Mangel zu erzählen. Link zur vollständigen Beilage: https://www.yumpu.com/de/document/read/68656162/allergien-und-atemwege #alpha1antitrypsindeficiency #alpha1antitrypsinmangel #atemwege
While the evidence is not conclusive, studies have shown a low intake of Omega-3 fatty acids (linolenic) compared to Omega- 6 fatty acids (linoleic) can cause an exaggerated inflammatory response that may increase the severity of allergies, asthma, high blood pressure, and heart disease. This may also be true for the inflammation of chronic lung disease. Research of smokers with chronic lung disease showed that eating plenty of fish (containing Omega-3 fatty acids) lowered the risk of bronchitis by as much as one-third and of emphysema by as much as two-thirds. To learn more, visit bfrg.alphanet.org or the Subscriber Portal to access our Big Fat Reference Guide to Alpha-1. #alpha1antitrypsindeficiency #healthmanagement #asthma #COPD #emphysema #lungdisease #liverdisease
News vom Pneumologiekongress: Alpha-1-Antitrypsinmangel In unserem Video-Interview berichtet Prof. Rembert Koczulla, Schönau am Königssee (@schoenklinikberchtesgaden), über den aktuellen Stand der Forschung zum Alpha-1-Antitrypsinmangel (AATM). Neueste Forschungsergebnisse hierzu wurden anlässlich des diesjährigen Kongress der Deutschen Gesellschaft für #Pneumologie und #Beatmungsmedizin (DGP) vorgestellt. Dass die Erkrankung Alpha-1-Antitrypsinmangel an vielen Stellen des Kongresses, so auch im wissenschaftlichen Programm, eine Rolle spielte, spiegelt die vielfältigen Anstrengungen zur Verbesserung von Diagnose und Therapie der seltenen Erkrankung wider. Link zum Video in der Bio oder https://t1p.de/vfihs Alpha-1-Antitrympsinmangel ist eine erbliche Stoffwechselerkrankung, bei der ein Schutzprotein, das Alpha-1-Antitrypsin, fehlt. Durch den fehlenden Schutz wird das Lungengewebe im Laufe der Zeit zersetzt. Die typischen Symptome der Erkrankung #Atemnot, #Husten, #Auswurf ähneln denen der #COPD. Deshalb und aufgrund der Seltenheit der Stoffwechselerkrankung wird die Erkrankung häufig erst spät diagnostiziert. #alpha1antitrypsindeficiency #alpha1awareness
#EhlersDanlosSyndrome #POTS #MCAS #ALPHA1AntiTrypsinDeficiency
To learn more about AlphaNet's REACH program for Alphas not on augmentation therapy, visit alphanet.org/community/REACH. #alpha1antitrypsindeficiency #healthmanagement #asthma #COPD #emphysema #lungdisease #liverdisease
On this day, we raise awareness about the global tuberculosis epidemic and the ongoing efforts to eliminate it. Let's work together to end tuberculosis and make the world a healthier place. #worldtuberculosisday #tuberculosis #alpha1antitrypsindeficiency #healthmanagement #asthma #COPD #emphysema #lungdisease #liverdisease
We want to know what it's really like to live with COPD. Tell us your story by taking our COPD In America Survey at our link in bio! #COPD #copdawareness #emphysema #alpha1antitrypsindeficiency #copdsupport
Weeks 10/11 of 32 in this pharmaceutical trial. This last week was so crazy and busy I forgot to post. Photo of me “hiding” behind wild peach blossoms. Kids working on the horse stalls. Today for week 11 the kids came with me-can you tell they were thrilled? Digger had a retirement in FL to be at. And the rest of today deserves its own post. #alpha1 #alpha1antitrypsindeficiency #copd #pharmaceuticaltrial
Der DGP findet dieses Jahr in Mannheim statt und ist im vollen Gange! Es gibt zahlreiche, spannende Vorträge zum Thema Lungen- und Bronchialkrankheiten und natürlich ausreichend Zeit für einen informativen Austausch!! #dgp #alpha1antitrypsindeficiency #alpha1antitrypsinmangel
Good oral health is important to everyone -- but especially Alphas! Proper oral hygiene can prevent pulmonary infections that can further complicate conditions like COPD. To learn more about the importance of oral health for Alphas, visit bfrg.alphanet.org or the Subscriber Portal to access our Big Fat Reference Guide to Alpha-1. #worldoralhealthday #alpha1antitrypsindeficiency #healthmanagement #asthma #COPD #emphysema #lungdisease #liverdisease
Am 9.3 war unser dritter Alpha 1 Patienten Tag in der Thoraxklinik am Universitätsklinikum Heidelberg Interesse selber dabei zu sein? Auch in 2025 werden wir wieder den Patiententag planen, schau doch regelmäßig in unserem Kalender auf der Homepage nach :) Vielen Dank an die Referenten Prof. Markus Ries und Prof. Franziska Trudzinski, an die Sponsoren CSL Behring und Grifols und ganz besonders an das Team der Thoraxklinik Beate Schaufler und Arturo Olivares Rivera. Es waren tolle Vorträge und sehr gute Gespräche...! #alpha1antitrypsindeficiency #alpha1antitrypsinmangel #patiententag #thoraxklinikheidelberg
Today, we extend our heartfelt gratitude to certified nurses who, through their dedication, provide exceptional healthcare. Their specialized expertise is pivotal in protecting the well-being of those in need. Let us acknowledge and applaud their essential contributions. #certifiednursesday #alpha1antitrypsindeficiency #healthmanagement #asthma #COPD #emphysema #lungdisease #liverdisease
🔍 Understanding Alpha-1 Antitrypsin Deficiency & COPD 🔍 COPD Episode 03 Alpha-1 Antitrypsin Deficiency is a genetic disorder that can predispose individuals to develop Chronic Obstructive Pulmonary Disease (COPD), even if they've never smoked. 🫁 Here's the scoop: In normal lung function, alpha-1 antitrypsin (AAT) works to protect the lungs from damage caused by enzymes released by white blood cells. However, in individuals with AAT deficiency, the production of this protective protein is insufficient, leading to the destruction of lung tissue over time. 😷 Now, here's the kicker: AAT deficiency can fly under the radar because it's often overlooked in non-smokers. But remember, COPD isn't just a smoker's disease! 🚭 Don't fall into the trap of tunnel vision in the emergency setting—always consider AAT deficiency as a possible cause of COPD, regardless of smoking history. ❓ Question for you: Have you ever heard of Alpha-1 Antitrypsin Deficiency before? #Alpha1AntitrypsinDeficiency #COPD #LungHealth #MedicalAwareness #GeneticDisorder #NeverSmokedCOPD #HealthEducation #KnowTheFacts #MedicalMyth #EmergencyMedicine Stay informed, stay healthy! 💪🏼
Welcome to our IG account! Please follow and share to help us find a liver liver lobe donation for our son, Caius! 🙏❤️ Follow 🔗 in bio #helpcaius #donatelife #kissesforcaius #liverdonation #alpha1antitrypsindeficiency
Do you worry about what others might think of you when you're in public because of your COPD? John shares some tips for going out confidently at our link in bio! #COPD #copdawareness #emphysema #alpha1antitrypsindeficiency #copdsupport
World Sleep Day is a chance for sleep experts and supporters to raise awareness about sleep health. This year's theme is Sleep Equity for Global Health. Sleep is crucial for overall health, but there are significant differences in sleep patterns around the world. Spread the word about sleep health on World Sleep Day and help bring attention to the importance of sleep. Learn simple ways to improve your sleep quality in "10 Tips for a Better Night's Sleep" available on AlphaNet's Subscriber Portal. #worldsleepday #alpha1antitrypsindeficiency #healthmanagement #asthma #COPD #emphysema #lungdisease #liverdisease
Alpha-1-Kids-Register soll helfen, die seltene Erkrankung besser zu verstehen Das Alpha-1-KIDS-Register, ein Register für Kinder und Jugendliche mit Alpha-1-Antitrysinmangel, wird von einem Team des Alpha-1-Center der Universitätskinderklinik Bonn unter der Leitung von Prof. Rainer Ganschow betreut. Die in dem Register gesammelten Daten sollen dazu beitragen, die Erkrankung besser zu verstehen und die Betreuung von Betroffenen zu verbessern. Die Teilnahme am Register soll so einfach wie möglich sein. Dazu hat das Team der Uni Bonn eine App entwickeln lassen und kürzlich veröffentlicht. Weitere Infos zu Register und App: https://t1p.de/vh5ts #raredisease #alpha1awareness #alpha1antitrypsindeficiency
I am so incredibly grateful for Rob’s support in recent years & wouldn’t have missed being a part of celebrating his remarkable career & life @commodoreballroom tonight. Rob’s dedication to raising awareness about #alpha1antitrypsindeficiency despite facing his own battle with terminal liver cancer is truly remarkable. His commitment to helping others, even in the face of personal adversity, exemplifies the strength of the human spirit. Through his efforts, Rob not only educates people about the condition but also honors the memory of his sister who succumbed to the same disease. His determination to make a difference in the lives of others is a testament to his character & the positive impact he has had on the world of music & beyond. As Rob continues his journey, his resilience & advocacy serve as an inspiration to many, reminding us all of the power of compassion & the importance of raising awareness for diseases like #alpha1antitrypsindeficiency. What a night! @crystalshawanda blew the roof off the place! Thank you for your tribute to Rob! Love to @whitneygoulstone for always supporting patients! #alpha1awareness #vancouver #yvr #commodoreballroom #hothotheat #widemouthmason #thewashboardunion #crystalshawanda #danielpowter #karenleebatten
Altered Playing Card. Title: Little Things. Looking forward to taking flight. Supplies used: vintage book pages, the paper studio cardstock, Tim Holtz word strips, paper bag bits, & ribbon. #alteredplayingcards #art #mixedmediaart #mixedmediaartist #mixedmedia #junkjournal #create #crafts #craft #craftersgonnacraft #create #layering #collageartwork #collage #timholtzideaology #timholtz #birds #arttherapy #pain #hope #alpha1antitrypsindeficiency #alpha1awareness #chronicillness
Why? Because individuals with COPD require more energy just to breathe! An individual without respiratory disease will use approximately 100 calories per day in expanding and contracting the muscles involved with breathing. A person with COPD, however, requires between 430 and 720 calories a day just for the work of breathing. This is true even if they are unaware of this extra work. To learn more, visit bfrg.alphanet.org or the Subscriber Portal to access our Big Fat Reference Guide to Alpha-1. #alpha1antitrypsindeficiency #healthmanagement #asthma #COPD #emphysema #lungdisease #liverdisease
Altered Playing Card. Title: Conference Call. This card reminds me of my Dad. Supplies used: Tim Holtz cutouts, remnants, & word strips, lace, button, vintage book pages, & paper clip. #junkjournal #art #mixedmedia #mixedmediacollage #layering #collage #collageartwork #collageart #vintagepaper #paper #paperartsypeople #papercrafts #timholtz #timholtzideaology #timholtzaddicts #rabbit #arttherapy #alpha1antitrypsindeficiency #hope #pain #chronicillness #vintagecrafts
Pulmonary rehab week is here! Join us in raising awareness about the benefits of pulmonary rehabilitation. This week-long event is a great opportunity to learn more about how pulmonary rehab can help improve the lives of individuals with lung disease. #pulmonaryrehabweek #lunghealthmatters #alpha1antitrypsindeficiency #healthmanagement #asthma #COPD #emphysema #lungdisease #liverdisease
I feel overwhelmingly grateful this morning! I took in the beautiful nature on my walk with the dogs this morning and was able to get my infusion only 2 days late due to an insurance change!! Thank you plasma donors for keeping me alive and to my neighbors with beautiful gardens that brighten my mornings!! #PlasmaDonorsSaveLives #alpha1warrior #groverbeach #alpha1antitrypsindeficiency #alpha1awareness
