Amyloidosis, a rare and unusual disease, occurs when amyloid proteins build up in the organs. Usually produced by cells in the bone marrow to help fight infection, these defective antibodies refuse to be broken down and recycled after they have served their purpose. Instead they travel through the blood stream to areas like the heart, liver, spleen, kidneys, gastrointestinal tract, and nervous system, where they interfere with the normal functions.
Symptoms of amyloidosis depend on which organs are affected. According to MayoClinic.com, these may include significant weight loss, shortness of breath, numbness or tingling in hands and feet, an irregular heartbeat, protein in the urine, swelling in ankles and legs, diarrhea or constipation, purplish patches around the eyes, difficulty swallowing, feeling full quickly after eating, an enlarged tongue, skin changes, weakness, and severe fatigue.
It is important to see a doctor if you persistently experience any of these signs. He will help to determine whether you are exhibiting symptoms of amyloidosis or another disease through a physical exam, blood and urine tests, and possible follow-up sampling of tissue biopsies.
While anyone can develop amyloidosis, the majority of people are over 60. There are four forms of the disease. Primary amyloidosis is the most common. Secondary amyloidosis is seen as an increased risk in those with a chronic infectious or inflammatory disease.
Familial history makes hereditary amyloidosis more likely. Advanced kidney disease increases risk of dialysis-related amyloidosis. The exact cause of the illness is unknown. Like Parkinson’s disease, there is no cure at this time. Treatments are available to help manage symptoms, and in this case, help to limit further production of the abnormal amyloid protein.
One Sun City resident, 75 years of age, diagnosed last November with Primary amyloidosis, informs us that through an EGD test, accompanying a colonoscopy, amyloids were discovered in her stomach lining. High protein levels in the urine also showed evidence of kidney involvement.
Through the national support group website for amyloidosis, she discovered her treating physician and hospital. The resident is now receiving her 18th weekly treatment of two chemo drugs (research continues in finding the effectiveness of cancer medications for this illness).
The resident thinks she may have 10-12 treatments left. Because of fatigue, she has cut back on walking. She is also very mindful of a nutritious diet and consuming lots of liquids, which she takes as tolerated.
Sun City resident Sam Geati, 75 years old in a few months, was diagnosed this past September with ATTR, a form of familial amyloidosis.
“At this time, it is only in my heart,” Geati said.
When asked what his symptoms of the disease were, he answered, “Only symptom is shortness of breath very quickly after any exertion.
“My doctor is a cardiologist who specializes in amyloidosis at Northwestern University Hospital,” Geati added.
While there is no medicine for Geati’s particular form, he added, “My doctor has given me diuretics to prevent swelling. Also, I am on a generic form of Coumadin called Warfarin, a blood thinner.
“The only dietary restriction has been toward low-salt meals,” he said.
Actively involved in a sports and music as a drummer, Geati has learned to pace himself, as well as asking friends also involved to watch out for him.
“When I was diagnosed with the disease, I immediately connected with a personal trainer to design a program that would help me maintain my current level of participation in sports and music. If the condition stays as it is, I know I can adjust to this lifestyle,” he said.
Because the disease is still little known, the existing Amyloidosis Support Group is found only on a national website. Chicago and its Northwest suburban residents are fortunate, however, to have the group’s president, Muriel Finkel, sponsor this June 8’s support group local meeting at Finkel Supply, Inc., 1285 Hamilton Parkway, in Itasca.
The seminar will take place from 9 a.m. to 3 p.m. Guest lecturers will include Dr. Martha Grogan, an amyloid cardiologist from Mayo Clinic, Rochester, and Dr. Cara Rosenbaum from the University of Chicago.
Because there is currently no state, town, or community group, Sam Geati would like to issue a plea to Sun City residents.
“I look forward to hearing from others who are afflicted with this very rare disease so that we might form a support group.”
Sam can be reached at 847-370-4114 and sam@mysundaynews.com
1 Comment
Thanks for the awareness. We have meetings in 22 cities throughout the US. We also have a meeting every other year in Chicago for people with the familial(hereditary) form of the disease and Senile (Wild Type TTR- not dementia). There is also a localized form of the disease and a Cerebral form that is not Alzheimer’s. Don’t hesitate to contact the ASG about our meetings and help navigating the sytem.There is a hereditary variant that strikes close to 4% of African Americans at middle age. If our doctors are not aware they cannot diagnose the disease. With quick diagnosis there is treatment, help and hope. Symptoms are listed on our website. Let us know if you can help with awareness. We want all to know they are not alone.
Amyloidosis Support Groups Inc.
Our on line group for patients and care givers www.amyloidosisonline.com
and www.familialonline.com