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My husband has been diagnosed with non-hereditary Amyloidosis he was interested in joining a clinical trial. We live in the Chicago area and recently found out that the FDA did not approve of the new treatment drug. Please advise.

Planet Ayurveda's treatment for Amyloidosis has given me my life back. It's truly the best

AL cardiac wild type

ATTR cardiac

I have hATTR and I need a Dr that is knowledgeable about this condition. I live in Enterprise Florida that is 40 minutes from Orlando metroplex. Please help.

I need assistance to cover the cost of Vyndamax. Please advise. Thank you. Sincerely, Jim Spann

Dear doctors do you use in your practise bendamustine insteed cyclofosfamide for AL amylodosis

Anyone like to comment on Carnivore diet for autoimmune diseases?

As someone with AL-Amyloidosis, I (we) all appreciate your efforts. 👍💯

What is it that makes the amyloid deposits start ? Is it an infection, or inflammation ,or something else ?

CAN YOU GET A VALID STAIN WITH CONGO RED FROM AN EEG BIOPSY IN A PATIENT WITH REFECTORY DIARRHEA?

Translation in italiano,plesse.thank s.

I'm feeling both frustrated and relieved. I went to my PA in MARCH, referred to pulmonary who said I had COPD, then to a cardiologist who said I had congestive heart failure. Two months later finally could get in for testing. Verdict was may have some form of amyloidosis. Had a long wait to get in to 2 nuclear tests. Diagnosis is ATTR-CM with other affected areas. I finally have an appointment with the original cardiologist to discuss options. That's the frustration. The relief is maybe at least there could be a treatment available. I've been on the internet trying to understand how I got here. It also makes me realize Fred Hutchinsons is 6 hours. away.

I have got Cardiac ATTR wt Amyloidosis, I was diagnosed last March but have not been given any medication only water tablets. I went to London Royal Free Hospital about a month ago and have been told I need not go again, in one year's time I can have a telephone consultation. I am very short of breath, fatigued and have back pain all the time. Why do you think that is, do you think I am beyond help? I am female and 81 years old.

If I have muscle atrophy with botox help me get my arm back working

I have macular amydolysis . I have done multiple laser treatment. Currently my dermatologist suggested me to do exercise. Can you please suggest me dietary changes or how I can reduce amydolysis protein . There is very little information out there . No body knows about this . Can you please please help me.

My brother in law suffering from Attr cardiac amyloidosis from five years. One year back installed pacemaker to heart for law heart beat. He is now suffering weakness, swollen legs, he feels gas fill in stumak.please help us about remedies.Now I come to know that FDA give approval to Tafamidis tablet (Pfizer company )to treat this disease. But that tablet are very costly. Not possible to purchase it. Please inform me to give him best treatment and to save him for his family. 🙏🙏🙏🙏

i enjoyed this excellent discussion :-) The analogies that Dr/Gertz used were very helpful for understanding what is going on in the body due to amyloidosis

this video was helpful to me in its mention of an important natural aid, which l can do: green tea extract.

How to treat it? I'm suffering from it for almost 11 years!! Still couldn't find a cure!!

Wild Type TTR

Very helpful

Al

i'm just trying to find out about this disease

I'm not. Sure where to write the questions, however, I have Al Amyloidosis affecting kidneys and heart, I live in NZ and it was more than 5 years before diagnosis was made, and it was discovered when I'd traced kidney failure and breathlessness. So I am keen to get some form of earlier awareness and earlier screening for people like me. I was in my 50 s when became ill. My light chains are down to 183 after four years treatment. The past year has been on Dexamethasone and Lenidiomide with really good results. What is the most effective way to diagnose AL Amyloidosis?

Years ago I was in a study at NIH because I had several eyelid surgeries to remove amyloid from both upper and lower lids on both eyes. I would love to know how to get that information. I wonder if my right leg that is horribly swollen has anything to do with amyloid. I have been to several vascular centers and even the hospital. They kept me at the hospital last time because I had several weeping sores around my ankle. They treated them with an IV drip of antibiotics but that is all they could do for me. Again they could find no reason. No clots. Please help me.

Question - what is the "typical longevity" of taking tafamidis, for example. The charts all seem to go down eventually, but it appeared that the tafamidis stabilized after a period of time.

Al amyloidosis

😳👵

Glad you found it helpful

Excellent, informative video even for a lay audience. Thanks!

thank you for this informative presentation It help me a lot Don

Great presentation after it begins. More thorough than some of the other CZcams videos I have seen on WT ATTR. Thank you for making this clear and understandable.

Lastima que es otro idioma y no puedo entender nada. Yo hablo Español. Mil gracias.

Hello, I wasn't able to watch the seminar. Will you be playing it again or can I get information. I wasn't able to get it to work on my computer. Thank you. Sincerely, Carol