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Very informative and descriptive video with 3D animation. Perfectly explained the process of disease formation and possible treatment effect. Highly recommend for watching even if you do not know anything about amyloidosis. Thank you!

Great , thank you

Have any treatment for this?

🎯 Key points for quick navigation: 00:00 *🌟 Introduction to the ARC webinar* - Rare Disease Day is on the 28th of February, promoting awareness and community involvement. - The Alloidosis Research Consortium (ARC) focuses on diagnosis, treatments, regulatory approval, and patient care. 02:31 *🔍 Introduction of speaker Kim Winter* - Kim Winter, a psychotherapist, discusses tools and resources for managing stress in the rare disease community. - Rare Minds, a non-profit founded by Kim, offers support for mental health and well-being in the rare disease community. 04:20 *📌 Managing stress using the stress bucket approach* - The stress bucket concept helps individuals manage stress levels effectively. - The stress bucket fills up with ordinary life events, uncertainties of rare diseases, and global events. - Recognizing signs of a full stress bucket and taking action to manage stress is crucial. 27:00 *📆 Managing uncertainty and addressing the things you can control* - Addressing uncertainty by making aspects of life predictable - Importance of preparing for stressful events like appointments and results - The significance of addressing what you can control and accepting what you cannot 28:10 *🤲 Re-befriending your body when living with a rare condition* - Shifting from a battle mindset to befriending your body - Understanding and accepting limitations of your body - Collaborating with your body to manage the rare condition effectively 30:18 *🤕 Managing symptoms and side effects of rare conditions* - Addressing pain by seeking help and exploring techniques like mindfulness - Understanding and managing fatigue through techniques like "spoon theory" - Dealing with embarrassment or shame related to symptoms through open communication and finding support 35:49 *😰 Managing anxiety and difficult emotions when living with a rare condition* - Developing techniques to manage anxiety, such as square breathing exercise - Recognizing and addressing difficult emotions like grief, despair, envy, disappointment, and anger - Building a support network with friends, family, and healthcare professionals to navigate through emotional challenges 52:57 *🩺 Communicating with healthcare professionals* - Communicate openly with your healthcare team about your concerns and needs. 54:59 *🧠 Managing fears about the future* - Focus on dealing with the present as dwelling on the unknown future can increase stress unnecessarily. - Acknowledge fears but don't invest in them, stay grounded in the present moment. 01:01:28 *🤝 Benefits of participating in support groups* - Support groups provide opportunities to meet others with similar experiences and challenges. - Access to emotional support, coping skills, and empowerment. - Connection to medical experts, patient advocates, and resources for disease management. Made with HARPA AI

Thank you for this detailed video! I have amyloidosis and started using Planet Ayurveda’s herbal supplements. They’ve helped me manage symptoms, and my cousin, who has a similar condition, has seen benefits too. Worth considering!

Hi Dan. Who is your doctor and what type of treatments are you receiving?

Thanks to team & channel, for this video on amyloidosis. I was diagnosed a few years ago, and Planet Ayurveda's herbal supplements have been a blessing. They've helped manage my symptoms effectively. My aunt also benefited from their products. Highly recommend for amyloidosis patients!

VELEZ JULY 14 2024. THANK. YOU.

Medical research has done wonders for the medical field, but unfortunately, it is unaffordable to many.

Thanks for sharing great content! My struggle with amyloidosis was daunting, but Planet Ayurveda’s supplements provided much-needed relief. My symptoms have lessened, and I feel healthier. A friend with the same condition also saw improvements. Highly recommend!

Mahamanjishthadi Kwath The formulation also helps in many skin related disorders due to its effect on blood. In rare conditions like amyloidosis the preparation works really well. thank you planet ayuveda

nice video. Planet Ayurveda's Aloe vitals capsule is a nutraceutical preparation which is very effective in maintaining healthy skin and digestive system.

For anyone battling Amyloidosis, Planet Ayurveda's treatment is the best. I've experienced incredible improvements.

I have been diagnosed with Mgus related to longterm use of sertraline, an SSRI. Thank you for this.

Its so impressive what medical reasearch has achived though out the years.

I was just diagnosed with amyloid cardiomyopathy because it's attacking my heart. I have too see a specialist at university of Michigan hospital for further evaluation for other organs with amyloidosis. I too was given vyndamax. Insurance didnt cover it, but grateful that Alliance rx was able to get some covered by insurance and the rest by the state. Otherwise it would be impossible to pay for. Cost here was $23,550.00. Hope your doing well. My journey with this has just begun.

Maybe next time ill b at d time. Poland dont know amyloidosis. 43 yrs and pissed off

For the pain, could you use CBD pil,?

Wow Love from India 🇮🇳

What an exceptional video! Your interview with the hATTR Amyloidosis Patient was conveyed in a remarkably clear and understandable manner for all viewers. I commend your seamless integration of elements like imagination, inspiration, and creativity into your content, which align perfectly with the themes of hope and meaning on my channel. I've liked and subscribed! Keep up the outstanding work!

I’m just trying 😅😅😅😅😅😅😅😅😅😅😅😅😅it’s iooooooooooooooooliii8,m😊

What did you do when you were working? I used my hands and I’m happy to have found out that I have this situation and the drug Vindimax.

I have the same type of Amyloidosis and now I take Vyndamax! It’s costly drug but my heart stated to me slows down the progression of the Amyloidosis. My Amyloidosis was discovered after having carpal tunnel surgery. I’m 80 years young and fortunatly all my test so far are reading good.

Super helpful! Great presentation!

Very informative. Many thanks for making the time to prepare and provide the discussion Dr Hanna. Well done.

If I recall correcting, in the beginning segment it was interesting to hear her present the modern dietary advice saying somewhat ambiguously to "drop red and processed meats as much as possible" and then go on to say "exclude the processed meats like salami and prosciutto" but not really discuss the red meats any further. It's not the red meats.bought fresh and raw which aren't adulterated by preservatives and other things... not sure if it was intentional in this case, but thats what the Netflix show "You Are What You Eat: A Twin Experiment" did... argued that red meats are essentially harmful and meats in general while failing to distinguish between meats that are soaled in all kinds of preservatives and other ingredients that are especially harmful, nor breading and frying fish and chicken in high omega 6 seed oils that become so oxidized and rancid especially with repeated frying. These are the core reason why meats are associated with health risks. If they ate fresh, quality meats raised on the foods they're evolutionarily adapted to eating and not crammed into tiny enclosures im pathogen filled barns, then such meats are among the highest yeilding foods in nutrition. There's a lot of compromised science pushing plant based everything to reduce global consumption levels.

Great 👍

Super uh......🎉

Thank you

I am trying to find information regarding gastrointestinal symptoms of Wild Amyloidosis. Where can I find this information. Thank you.

nice video

❤

Where has this guy been for the last seven months?

Could you expand on what Dawn's treatment consisted of? She mentioned infusions and shots in the video; would be curious to hear which specifically.

Greatness... Thank you...

I wish we had known with my Mom. She suffered for years and they kept saying "your heart" and we lost her 3 months from her diagnosis.

Hi, Ralph, I was diagnosed with amyloidosis wild type in June of 2022. Like you I had multiple Carpel tunnel surgeries which would have been the first indicator for me, had It been diagnosed. Worst yet I had a cardiologist who failed to make a connection even when my heart began to thicken, So I have no idea how long it's been going on, but obviously longer than the date of my diagnosis. Awareness is definitely a problem, but when I mentioned this to my hand surgeon he could care less. Because there is a lot more money in treating the symptoms than finding a cure. If you haven't already, I would suggest joining an amyloidosis support group. I wish you the best.

👏 "Promo SM"

Sorry for your illness. Life has certainly taken us all in many directions.

Thank you for the very informative amyloidosis webinar. Tomorrow, I will have a bone marrow biopsy performed. I am nervous but also trying to learn as much as I can about amyloidosis and my son found this series of videos. My hematologist and cardiologist have not positively confirmed amyloidosis nor the type. But I am trying to be as prepared as I can to take this on. I have been going through a series of test and scans to confirm. I also have a PYP scan scheduled early September. Gerald from Sacramento, CA.

I have the same diagnosis but with different symptoms. I'm 4 years since my diagnosis and have the same meds as yourself. I hope it is delaying the end result but I don't know. When the end comes, it comes until then I will crack on...within my limitations.

Thank you again for these patient testimonies. I want to share my story too eventually. 🙏

Thank you for this. I relate so much to being totally exhausted from the diagnostic journey. Diagnosis is relief.

Thanks

I've been looking for a diagnosis and knowing something is wrong for the past 7 years also. This story was really comforting because I've also been told I'm fine when I've known I'm not. It took whole genome sequencing for me to find this condition. I've had entire hospital systems dismiss me to the point where I believe my file was flagged as some kind of mental case. The psychological stress this causes is the last thing any patient needs. If I can get my strength back, I'm going to do whatever I can to combat the idea that multiple system complaints with no diagnosis justifies treatment for a psychosomatic condition. I've had doctors tell me having tests done was my problem and wanted me to get better by reading self-help books. I've read self-help books my entire adult life and knew there was absolutely no book that could fix what was wrong. The suggestion seemed absolutely absurd...like telling a type 1 diabetic to positive think their way to more insulin. I'm all for miracles, but that's not exactly what I expect when I go to the doctor.

Not only is this research critical, but so is proper testing. My doctors didn't know what was wrong with me and wanted whole exome sequencing done. My insurance denied it saying that, at age 46, I was too old to benefit from anything this test would reveal. I had to pay out of pocket to find out I have a pathogenic TTR gene mutation. I'm glad to know there are treatment options for me. I feel like my insurance company needs to be punished for obstructing my care.

My mom is doing chemo now for al amylydosis. I just drove in to take care of her and shes so skinny. My first job is to get her to eat and i see thst everybody who is doing better got stem cells

Stage 3A, started treatment 1/24/23 Cybord+Dara. Numbers are normal now. Trop40, bnp 3200..wasn't a candidate for Cael101 trial because of hypotension..probably not a candidate for sct because of hypotension. Ef 50% no wall thickening. 4 failed.cardioversion. ablation scheduled for 8/4/23 after 6 months weekly chemo then once a month for 18 months. Very informative video. Just scared became i read life after diagnosis is usually 14months

I have these symptoms. All of them expect swelling. I have seen 5 cardiologists and have pain in my organs and back and can’t breathe. 3 years and undiagnosed still. Could be anything. I know how I’m feeling and where I’m feeling it. The shortness of breath I’ve had is completely not normal neither is the pain. I have abnormal cpets but nothing else. Last cpet did show cardiac dysfunction.