Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 > > Hi Everyone, > Have y'all ever run across an historical figure that likely had > SMA? I understand that SMA wasn't really well understood until > recently, and that someone with SMA type 2 might have been diagnosed > as having something else prior to the 1950's or so. But, it seems > like there would be someone somewhere in history that we can look > back now and guess that they probably had SMA. is studying > history in school and is getting interested in disability history. > There's some great resources out there in general. We've found a lot > of references throughout history to people with Polio or ALS, but it > would be neat to locate a figure that might have had SMA. Anyone > here have any suggestions? > > Another interesting point… I have met a few people who know that SMA > runs in their family. But, no one I've talked to recalls that > anyone in their family had SMA before like 1950 or so. It seems > like someone would be able to point to great Grandma So-And-So's son > or daughter who we now believe had SMA. Interesting idea to ponder. > > Thanks, > > HI DAVID, MY NAME IS RAENA. NO ONE ELSE IN MY FAMILY HAS SMA, BUT STRANGELY, THERE ARE SOME WITH ALS THAT ARE SEVERAL BRANCHES OFF MY FAMILY TREE. THEY WERE TESTED AND THEY DIFFENTLY HAD ALS. BOTH ARE CAUSED BY DEATH OF THE ANTERIOR HORN CELLS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 Hi , There are many disability studies programs popping up around the US. I'm not sure how to approach such a specific question about people with an SMA diagnosis, but for disability history in general, I recommend checking out the Institute on Disability at Sn Francisco State University - http://bss.sfsu.edu/disability/ Also, you might have some luck searching for people using older terminology such as Werdnig-Hoffmann Disease and Kugelberg-Welander. Cheers! Alana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 In a message dated 7/13/2006 4:04:05 P.M. Central Standard Time, way2square@... writes: Another interesting point… I have met a few people who know that SMA runs in their family. But, no one I've talked to recalls that anyone in their family had SMA before like 1950 or so Well before the 50's and even during the 50's it wasn't that unusual for healthy children to from the flu and other illnesses. If they had type 1 or 2 and caught pneumonia early before major symptoms of SMA it might have gone unnoticed. Then you need to consider any abortins & miscarriages (that werent always talked about before the 60's) could have had SMA. Even if the gene runs in a family you still need to reproduce with someone that also has the gene and then its only a 25% the baby will have SMA. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2006 Report Share Posted July 14, 2006 I was born in 1948. My SMA was apparent from birth but my diagnosis is SMA, type 3. When I was 4 the Doctor called it Amytonia. I didn't get the SMA, 3 label until much later. Lainie way2square <way2square@...> wrote: Hi Everyone, Have y'all ever run across an historical figure that likely had SMA? I understand that SMA wasn't really well understood until recently, and that someone with SMA type 2 might have been diagnosed as having something else prior to the 1950's or so. But, it seems like there would be someone somewhere in history that we can look back now and guess that they probably had SMA. is studying history in school and is getting interested in disability history. There's some great resources out there in general. We've found a lot of references throughout history to people with Polio or ALS, but it would be neat to locate a figure that might have had SMA. Anyone here have any suggestions? Another interesting point… I have met a few people who know that SMA runs in their family. But, no one I've talked to recalls that anyone in their family had SMA before like 1950 or so. It seems like someone would be able to point to great Grandma So-And-So's son or daughter who we now believe had SMA. Interesting idea to ponder. Thanks, --------------------------------- How low will we go? Check out Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2006 Report Share Posted July 14, 2006 Hi All, This is an interesting topic but a very challenging one. You have to remember that the prognosis for people with SMA has improved steadily over the years. It used to be said that infants with SMA type I don't live beyond 2 years age. Today, there are people with SMA type I in their teens. The prediction for people with SMA type II was that we would die in early adulthood. Now Lainie and Lori and many others can prove otherwise. Connie Panzarino died in her 60's, June Price in her late 50's. Both had SMA type II. My point is that back in the 1970's the gloomy predictions might have been more or less accurate. But as medicine has progressed our life expectancy has improved considerably - thank god. At times earlier than that, children often died of flu or pneumonia or whatever contagious disease. Their death was assigned to the contagious disease. Nobody really knew if they actually had a genetic disease such as SMA which was their reason for catching the flu or influenza in the first place. My mother is interested in genealogy. In her studies, she found that one of my greatgrandparents had two sisters who died before two years of age. It is possible that the two sisters had SMA - but it is also possible that they died of some disease that was going around. So - it can be very difficult if not impossible to find people who had SMA (or Werdnig Hoffman or Kugelberg-Welander) as a diagnosis before 1970's. The gene has been there always but it has been masked behind so many clouds of mystery that it is not possible to find it - I think. But it is great if somebody can prove otherwise. many smiles Taya Re: SMA in History I was born in 1948. My SMA was apparent from birth but my diagnosis is SMA, type 3. When I was 4 the Doctor called it Amytonia. I didn't get the SMA, 3 label until much later. Lainie way2square <way2square@...> wrote: Hi Everyone, Have y'all ever run across an historical figure that likely had SMA? I understand that SMA wasn't really well understood until recently, and that someone with SMA type 2 might have been diagnosed as having something else prior to the 1950's or so. But, it seems like there would be someone somewhere in history that we can look back now and guess that they probably had SMA. is studying history in school and is getting interested in disability history. There's some great resources out there in general. We've found a lot of references throughout history to people with Polio or ALS, but it would be neat to locate a figure that might have had SMA. Anyone here have any suggestions? Another interesting point. I have met a few people who know that SMA runs in their family. But, no one I've talked to recalls that anyone in their family had SMA before like 1950 or so. It seems like someone would be able to point to great Grandma So-And-So's son or daughter who we now believe had SMA. Interesting idea to ponder. Thanks, --------------------------------- How low will we go? Check out Messenger's low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2006 Report Share Posted July 14, 2006 Regarding family history - my wife's first cousin lost her first son - Devon (a beautiful little boy) - to Type 1 SMA shortly after his first birthday in 2002. My mom has a 2nd cousin (who's in her 60's now) who has had breathing problems and mobility issues (she now uses a electric scooter) - for the past 20 or so years. No official diagnosis has ever been established though. My wife & I think that perhaps she has Type 3 - or adult onset Type 4 based on descriptions of her symptoms by other relatives - I personal have not me her. Thus, while the occurence of SMA is somewhat dictated by the " 1in35 or 40 " of the general population being carriers, further limited by the recessive nature of SMA resulting in ~ 1 in 4 chance of any child resulting from 2 carriers - I would say, such probabilities, though low, are actually quite high in relative comparison to most other recessive hereditaty conditions (that the general public may be aware of, but have a lower carrier frequency). I think this will be born out even more with specific genetic testing resulting in more confirmed diagnoses combined with better birth survival rates than from the last century. MWW --- " N. Houser " <smamommy@...> wrote: > My paternal aunt died when she was 6 from " polio " . > My father mentioned that > they had to use an iron lung, but that's about all > of the info he gave me. > He was young at the time (she was his older sister), > so he can't remember if > she had symptoms leading up to it, weakness, etc. > ... of course he is > totally sure it was polio, but I believe otherwise. > It's just too much of a > coincidence to me, you know? > > > > Mom to , age 14 (SMA-free) > > Jensen, age 11 (SMA II/III) > > Kameron, age 8 (SMA-free) > > > > ~~ PRAY FOR A CURE IN 2006!!! ~~ > > Please help fight Spinal Muscular Atrophy, visit > www.smasupport.com > > Then visit all of our amazing, wonderful friends at > www.our-sma-angels.com > > " Don't cry because it's over. Smile because it > happened. " Dr. Seuss > > " Do not go where the path may lead; go instead where > there is no path and > leave a trail. " Ralph Waldo Emerson > > Re: SMA in History > > > Hi , I have type 3 SMA and there hasn't been > any one else in our > family that has had SMA, but there have been a few > people down the line that > have had polio. I was first diagnosed with Polio and > they said I was half > paraplegic when I was 5. It wasn't till a few years > later that they guessed > that I had SMA and just did blood test 3 years ago > to confirm it and I am > 32. So I think that your right, there were probably > a lot of people in > history with SMA that were mis diagnosed. > > * Hugs,* Tammy > > > way2square <way2square@...> wrote: > Hi Everyone, > Have y'all ever run across an historical figure > that likely had > SMA? I understand that SMA wasn't really well > understood until > recently, and that someone with SMA type 2 might > have been diagnosed > as having something else prior to the 1950's or > so. But, it seems > like there would be someone somewhere in history > that we can look > back now and guess that they probably had SMA. > is studying > history in school and is getting interested in > disability history. > There's some great resources out there in general. > We've found a lot > of references throughout history to people with > Polio or ALS, but it > would be neat to locate a figure that might have > had SMA. Anyone > here have any suggestions? > > Another interesting point… I have met a few people > who know that SMA > runs in their family. But, no one I've talked to > recalls that > anyone in their family had SMA before like 1950 or > so. It seems > like someone would be able to point to great > Grandma So-And-So's son > or daughter who we now believe had SMA. > Interesting idea to ponder. > > Thanks, > > > > --------------------------------- > Do you ? > Next-gen email? Have it all with the all-new > Beta. > > [Non-text portions of this message have been > removed] > > > > > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2006 Report Share Posted July 14, 2006 's class has been assigned a project to write a report about how a person lived in another time in history. It can be a fictional story, but it has to be based upon historical facts. wants to write a story how about a girl with SMA might have lived in the 19th Century. So far, she found a really cool cover page for her report on the internet… http://www.disabilitymuseum.org/lib/stills/258.htm There seems to be a lot of references in history to " Infantile Paralysis " which is a blanket term for Polio. I am wondering if this term may have been used as a loose diagnosis for people with SMA, Freidrich's Ataxia or other conditions before medical experts really understood them. Since Polio was understood long before these other conditions, people studying history first began to look back and say that all those kids with Infantile Paralysis must have had Polio. But, I wonder if some of them had what we now call SMA. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2006 Report Share Posted July 18, 2006 Hi everyone, I am 58 myself and had a cousin with SMA who would have been 60 were he living today. We also have a cousin with SMA who is a teenager. I had a very good friend with 4 siblings who all had SMA III. They were born from 1915-1922. The one who lived to be the oldest was 81 when he died. They were all diagnosed with some kind of Muscular Dystrophy in the 1930's. It was not until the 1950's that they were told it was SMA III. I was originally diagnosed with Muscular Dystrophy and changed to SMA I/II in 1960. Pamela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2006 Report Share Posted July 23, 2006 In a message dated 7/13/2006 2:04:04 PM Pacific Daylight Time, way2square@... writes: Hello I'm Derik. Good point to ponder. My father passed away when I was an infant. But I heard straight from his mothers mouth some 35 years later. She in Iowa and me in Calif. That my dad had trouble passing the military boot camp drills. Hed fall alot. His father was a drill sargent even. Army just concluded that his feet were to small and suited him up anyway. This was told to me prior to me being diagnosed at 45. I kinda think he had this as well. Derik Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2006 Report Share Posted July 23, 2006 Hi, . I had a maternal aunt who was diagnosed with Werdnig- Hoffman disease when she was born in 1954. She died that same year. My Grandmother's family never really talked about the disease just that it was a muscle disease as we were growing up. My dad lost a sister to a respiratory illness as well back in the fifies. My husband and I had our little girl, almost 50 years later with no other cases in that 50 year time frame. No one knows for sure whether my husband got the gene from his mother or father but both families have a history of losing infants to respiratory illnesses. Doddie, Mom to Angel (2 Apr 03 to 15 Mar 04) www.babiesonline.com/babies/c/christ > > Hi Everyone, > Have y'all ever run across an historical figure that likely had > SMA? I understand that SMA wasn't really well understood until > recently, and that someone with SMA type 2 might have been diagnosed > as having something else prior to the 1950's or so. But, it seems > like there would be someone somewhere in history that we can look > back now and guess that they probably had SMA. is studying > history in school and is getting interested in disability history. > There's some great resources out there in general. We've found a lot > of references throughout history to people with Polio or ALS, but it > would be neat to locate a figure that might have had SMA. Anyone > here have any suggestions? > > Another interesting point… I have met a few people who know that SMA > runs in their family. But, no one I've talked to recalls that > anyone in their family had SMA before like 1950 or so. It seems > like someone would be able to point to great Grandma So-And-So's son > or daughter who we now believe had SMA. Interesting idea to ponder. > > Thanks, > > Quote Link to comment Share on other sites More sharing options...
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