GENETICALLY INHERITED DISEASES Dear Muriel:- Thank you Muriel for your note. It was very touching to me & very kind of you to write & tell me you enjoyed the posting on the Wells family mailing list. I'm glad it was forwarded on to you. My father died 10 years go from ALS, I believe is a form of Multiple Sclerosis & it was really hard to see him go to such a terrible diseases in such a short time & knowing there was nothing I could do to stop it. Sometimes we just don't understand why God lets these terrible things happen to such good people. After some time passed I started searching my family history to learn about my ancestors & also to try to find out info on the causes of deaths of not only his family but my mothers too. I wanted to have another child but did not want to pass on a bad gene to another generation. I was told by my family doctor there was no way of knowing if I was a carrier back then, if I had a son then the chances might be higher. I had a daughter but the thought never goes away. She will never know the love & kindness of her grandfather but she is my sunshine. My dad would have loved the treasure hunt I have been on looking for info on his Ralston family, not just for the medical info but for the family history & tracing them back in time to learn more about their lives & the times they lived in. I don't find any such illness in his line but it was not know by that name many generations ago. I didn't share this story with the mailing list- my father wasn't from the Wells family but I couldn't help post the note to let others know the importance of learning their family medical history if not for themselves then to do it for the sake of their children. My father in-law had diabetes & he has passed away a few years ago. His mother lost both her legs from it & now my Brother in-law found out he also had it a year ago & has lost a foot due to it. I have had my husband checked & my oldest daughter checked & will always keep that in mind in the future to watch for the signs so we can catch it early. I just hope others will be aware of learning more about their medical history & discuss it with their family doctors. The more we learn about our medical history the better we can help the doctors to treat our families. Thanks again for your note & Happy Trails in all your researching in 2000. Kim Oklahoma - 19 - --------------------------- AMYOTROPHIC LATERAL SCLEROSIS (ALS) Internet Information from ALS Society of Canada <alscanada@als.ca> ALS is a rapidly progressive, fatal neuromuscular disease. It attacks the motor neurons responsible for transmitting electrical impulses from the brain to the voluntary muscles throughout the body. When these muscles fail to receive messages, they eventually lose strength, atrophy and die. There is no known treatment. Anyone can get ALS. Over 3,000 Canadians currently have the disease. Two to three Canadians die every day of ALS. Why is it known as LOU GEHRIG's Disease? LOU GEHRIG, a famous baseball player in the U.S. during the 1930's, became afflicted with ALS. He was known as baseball's "Ironman". Strength, agility, excellent health - Lou Gehrig had everything it took to become a baseball legend. But Lou Gehrig had something else. At the peak of his career, he was diagnosed as having Amyotrophic Lateral Sclerosis (ALS). He died at the age of 38. When was ALS first discovered? ALS was first described in 1869 by Jean-Martin Charcot, a French neurologist. Since that time a number of theories about the cause of ALS have been developed. Some scientists believe it is possible that ALS is caused by a slow-acting or latent "virus". If it is caused by an organism, there is absolutely no fear that it is contagious. There is no increased incidence among medical personnel who deal with ALS patients. Work has also been done on the possible role of the thyroid gland and trauma. What causes ALS? The cause is not yet known although several theories are now being researched. At present neither a cure for ALS nor a means of prevention is known. In 1993, scientists announced in a paper published in the British journal "Nature" that they had isolated the gene associated with about 20% of the cases of the inherited form of the disease. While only 10% of ALS patients have this genetic predisposition there is no evidence of a clinical difference between the familial and the sporadic forms of the illness. What about environmental causes? The very high incidence of ALS on the island of Guam, in Western New Guinea and on Kii peninsula of Japan may provide some clues about environmental influences. Heavy metals such as lead and mercury are suspected causes, as is aluminum, which can poison the body and cause ALS symptoms. Some people may have a genetic makeup which makes them susceptible to an environmental cause of ALS. - 20 - -------------------- WHAT PARTS OF THE BODY DOES IT AFFECT? Because it attacks only motor neurons, ALS does not affect the mind. The person with ALS remains mentally sharp and in full possession of the senses of sight, hearing, taste, smell and touch. Bladder and bowel muscles are generally not affected by ALS. ALS seldom causes pain, although some people do have cramps and secondary discomfort from lengthy sitting or lying down. IS SEXUAL FUNCTION AFFECTED BY THE DISEASE? No. ARE THERE DIFFERENT TYPES OF ALS? There are three classifications: SPORADIC (which is the most common form of ALS) FAMILIAL (a small number of cases suggest genetic inheritance of ALS) GUAMANIAN (a high number of cases of ALS occur in Guam and the Trust Territories of the Pacific) WHAT ARE THE EARLY SYMPTOMS OF ALS? ALS usually becomes apparent either in the throat or upper chest area or in the arms and legs. Some people begin to trip and fall; some lose the use of their hands and arms; some find it hard to swallow and some slur their speech. Can you "catch" ALS? And what does it do? ALS cannot be "caught" - it is not contagious. In 90% of ALS cases, it strikes people with no family history of the disease. Ten percent of the cases are classified as familial or inherited ALS. It may occur at any age, with the likelihood increasing as people grow older. However, many are struck down in the prime of life. ALS occurs equally in men and women. Because the disease frequently takes its toll before being positively diagnosed, many patients are debilitated before learning they have contracted ALS. The disease does not affect the senses of taste, touch, sight, smell and hearing, or the mind. ALS wreaks a devastating effect on patients as well as their families. As they struggle to cope with the prospect of advancing disability and death, it consumes their financial and emotional reserves. It is a costly disease in its later stages, demanding both extensive nursing care and expensive equipment. Is there hope for people with ALS? Yes, certainly. Based on recent medical discoveries, drug trials are now underway. Advances in our knowledge about other neurological diseases may also continue to shed light on the cause of ALS and help us find a cure. What is the incidence of ALS? How many people in Canada are affected? It is not a rare disease, anyone can get it. It affects about six or seven people out of every 100,000. Over 3,000 Canadians currently have ALS. Two to three Canadians die every day of ALS. Most people with ALS are between the ages of 50 and 75 though there are cases of teenagers with the disease. In about 5-10% of cases of ALS there is a hereditary pattern. About 90-95% of cases are "sporadic" ALS: anyone can be affected. This can occur at anytime within two to five years of diagnosis. What is the average life expectancy? This is between two and three years for the newly diagnosed person. However, it is important to understand that improved medical care is resulting in longer and more productive lives for people with ALS. Twenty percent will live more than five years and up to 10% will survive more than ten years. For further information: <http://www.als.ca/alsWHAT.htm> - 21 - ======================== ALS is similar to Multiple Sclerosis -- the person remains alert, able to do many things -- while the muscles waste. There are different characteristics, but if one was doing a Disease Family Tree, I would suggest these be "cousins". Attachments are available -- more diseases needed -- memos will be posted "anonymously" unless otherwise requested. Muriel M. Davidson <davidson3542@home.com>