Amyloidosis is not that rare a disease. Pharmaceutical companies and a huge number of semi-useless physicians scam us into accepting that false category. Amyloidosis, especially wtATTR (Wild Type), is far more prevalent in the over 60 year-old population than greedy Big Pharma wants us, the FDA, or Medicare to know. That way they are able to charge exorbitant drug prices for so-called Orphan Drugs. A Rare Disease it is not.
Doctors just are not using proper diagnostic tools to explore and investigate our infiltrative/toxic disorders.

AL is the least common form of Amyloidosis, while hATTR is more common. Wild Type is by a large margin, the most prevalent form of Amyloidosis. Perhaps up to 13-15% of those with heart failure over the age
of 75 have WtATTR. Especially in the presence of a preserved LVEF, carpal tunnel Syndrome, spinal stenosis, cardiac arythmias, ED, digestive tract issues, and cardiac electrical conductivity issues.

Doctors just don't know or have adequate training, to move out of their limited drop-down diagnostic grab bags to recognize it. Or they don't spend enough time to think about all of your seemingly unrelated symptoms that can be explained by Amyloidosis.

If your Doctor doesn't look for it, they can't find it. If they don't order or use scintegraphy after a echocardiogram or cardiac MRI that shows unusual scarring and thickened heart wall to further check for an infiltrative disorder, we as the afflicted, may suffer and die prematurely due to an undiagnosed life- threatening disorder. Most cardiac drugs prescribed to treat common heart conditions may worsen our amyloid disorders. Thickened heart walls too often are misdiagnosed as Hypertrophic cardiomyopathy (HCM), etc.

Low sodium foods, less processed foods, no fast foods, are what we should all stick to in our everyday lives. Diuretics are not an adequate substitute or cure-all for fluid retention issues. Act responsibly by avoiding most restaurant food and most prepared foods. There is no magic pill if you eat indiscriminately as most Americans due. Hence skyrocketing diabetes, metabolic disorders, and other avoidable illnesses.

Keep the faith, be strong, don't surrender to the disorder. Fight, fight, fight. God bless all during this Holiday Season!

I am most grateful for the loving support from my new wife--married May 2021 before knowing I had amyloidosis. Also the support from my kidney doctor, who had only seen amyloidosis in medical school and who was reluctant to take me on at age 83 until she met me, has been my strongest supporter. And the haste my oncologist acted to get my treatment started. And a cycling friend who knew the right people at Emory and was able to twist some arms to get an early appointment with the doctor at Emory who is directing my treatments.

My concern now is slowing the flow of fluids into my legs, feet, lungs. But I will stay on my regime: exercise best I can, eat healthy, stay on meds per doctors, say some prayers. And try to get in a good laugh each day.

I am thankful for vyndamax61
I am worried I might die before a amyloid remover drug is approved

I’m grateful for the wonderful doctors I have.

I’m grateful for God having mercy on me and providing me with good people in my life to help me through this journey.

I’m worried that the amyloid removal drugs won’t get approved or that they are unaffordable.

My biggest worry is that I will “earn my wings” before I can enjoy a long retirement with my boyfriend. I don’t want him to be alone.

I am grateful to have good family support, good medical support and, most of all, grateful that I am now able to exercise again!