Amyloidosis. Diagnosis, treatment, frustration. AL, hATTR, etc.
Perhaps the most difficult disorders are those which offer little hope, such as some forms of Amy. The diagnosis is very difficult, slow, frustrating and non-sensical. Some say even illiterate and ego-driven for those with the symptoms and signs. Many of the individual types, such as Cystatin C and others show up at rates of less than one in a million per year, some less than one in 100 million per year. So far, my diagnosis has taken over 50 years, and I suspect will take another 5, if I live that long. My life expectancy is now about 2 years, we suspect. The best known centers in the USA are Mayo-MN, Boston, Stanford, City of Hope. Story at: https://bit.Ly/1w7j4j8