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My Name Is Andrew McManamon, And This Is My Porphyria Story: In honor of Porphyria Awareness Week April 15th-22nd, I've decided to share my Porphyria story in hopes to create awareness to the masses and get some of these hardships off my chest. Porphyria is a lifelong struggle for patients, parents, guardians, friends and spouses. As much as we’d like to pretend it’s not a part of our lives, we can’t because there’s numerous triggers we have to be aware of, from diet and nutrition to exercise and sleep. It doesn’t matter if you have an attack once a year or 2-3 a month, it’s important to take care of yourself and continuously be learning about what you should and shouldn’t do. Become aware of the resources out there available to you, from the American porphyria foundation website to the facebook groups where I, myself have talked to several people like me who battle this every single day to gain a better perspective. I know balance is hard in every aspect of life, but don’t let this consume your life, despite how much time porphyria will take you away from it. As I mentioned at the end of the last point, it’s easy to be negative about this and let it swallow you whole. It takes some time to bounce out of that. I feel even after several years since my first attack, I still let the negativity of these attacks affect me on a daily basis and that’s something I’ve never really admitted to anyone to that magnitude anyway. It’s hard to express, and hard to break down the feelings and actually voice how you want others around you to react, because as I said, negativity is contagious. I sometimes feel like I haven’t fully accepted the weight of this disorder and a part of me is in denial, but like I said, it just takes time. Nobody is perfect and life is all about progress no matter how big or little the step is. With that in mind, Get a support system around you, and realize you’re not alone even when it feels like it. Talk with friends and family, consider even talking with a therapist to have some unbiased conversations to expand your perspective. I can admit I’m very stubborn in this aspect of talking more openly about it, and that’s one of the reasons I decided to force myself to do this video after neglecting it for several years, because at the end of the day, it’s not about me, it’s about all the people out there who went through and are going through the same situations and hardships as me to try and find answers, so If making this video and becoming a little vulnerable is all I have to do to help just one person, then I’m happy to do it. If you or someone you know has porphyria and want to talk to someone who has it as well, my door is always open and you can message me on social media whenever you want about whatever you want. I just want to be a resource for those in need. I hope this video helped you as much as it did for me. Read My Story On The American Porphyria Foundation's Website: -https://bit.ly/3MBeLZa Donate To The American Porphyria Foundation: -https://porphyriafoundation.org/get-i... Porphyria Facebook Groups: - / americanporphyriafoundation - / apf.aip.hcp.vp Chat With Me On Social Media: - / andrewmcmanamon - / andrew.mcmanamon ===== 0:00 Describing Acute Intermittent Porphyria 1:04 When Was Your First Attack? 4:17 Second Porphyria Attack 6:14 Handling Attacks & Experiences 9:39 How Do You Live With Porphyria? 10:25 How Has Porphyria Impacted YOUR Life? 13:38 What Advice Do You Have? ===== #porphyria #acuteintermittentporphyria #aip #porphyriaspotlight