The 'disabled community's' view of stem cell research?

[caitlins]

I am in a Disability and Society class at the University of Washington and am writing a final paper on stem cell research. I was told to write about the "disability community's perspective" of stem cell research. I was wondering if those of you who have a spinal cord injury or even another kind of disability wouldn't mind telling me your thoughts about stem cell research - whether you support it or not, whether you think it would be helpful/harmful, etc.
I would really appreciate your comments!
Thanks
Caitlin

[Leo]

hi caitlin and welcome to CC,

I have ranted on this issue many times here, please do a search.

"disability community's perspective" of stem cell research.

there seems to be two groups, disability leadership and disability community

i would be pleased to hear the response to your question from the disability leadership

[Nicksdad]

I am in a Disability and Society class at the University of Washington and am writing a final paper on stem cell research. I was told to write about the "disability community's perspective" of stem cell research. I was wondering if those of you who have a spinal cord injury or even another kind of disability wouldn't mind telling me your thoughts about stem cell research - whether you support it or not, whether you think it would be helpful/harmful, etc.
I would really appreciate your comments!
Thanks
Caitlin

A link to a letter that speaks for myself.
/forum/showpost.php?p=673136&postcount=18

[hhecker]

I've been a paraplegic for just over 5 years now. Though I know my knowledge about current research is seriously lacking in comparrison with many other Care Cure members, I have read enough to objectively state that if there is hope for us, it lies with stem cells.

Personally I unequivocally support ALL stem cell research.

[betheny]

I support all stem cell research, for all conditions. I am not 100% sure they will cure us, as I am not a doctor. I would just like no stone left unturned.

1. Please note: Embryonic stem cell research DOES NOT utilize aborted fetuses.
2. Note also: The embryo created by in-vitro fertilization and not implanted in the womb is discarded in the trash. This is what is needed for embryonic stem cell research.

People tend to miss those 2 points, so I wanted to clarify them.

[kenf]

there is so mush news on stem cells. i'm sick of hearing all the things they maybe can do. it's time to get the show on the road.

[Cherry]

Must be pursued at all costs - would be a gross public disservice not to. Like Betheny says, embryonic stem cell research does not = a baby cull [as I once saw it referred to as] or an abortion. The blastocysts [clumps of cells] used are destined for the incinerator and were never intended to become a human life.

Stem cell research is the future of medicine. Individuals like Bush cannot deny it forever,

[Steven Edwards]

Hi Caitlin,

Happy to help.

As someone with a spinal cord injury, I support both adult and embryonic stem cell (ASC and ESC, respectively) research. I think both are important and should receive federal funding.

ESCs offer great promise because they are pluripotent, meaning they can form every type of cell in the human body. [Ed. note: the term pluripotent really describes (based on etymology) a cell with the potential to form many cell types, but the the word is commonly used in the media to describe a cell with the same flexibility as an ESC. It's hard to correct pervasive public misconceptions, so I just go with the flow and misuse the term.]

ESCs—or, pluripotent stem cells more generally—will allow researchers to grow unlimited numbers of adult stem cells for use in transplants.

There is a current shortage of bone marrow for bone marrow transplants, so pluripotent stem cells can be used to eliminate that problem. Neural stem cells (for stroke, spinal cord injury, etc) are difficult to isolate—growing them in a lab from pluripotent stem cells is much easier than obtaining them from the brain.

ESCs offer the most promise, in my opinion, when it comes to studying genetic diseases. Getting diseased ESC lines is tricky, as it would require cloning.

A recent discovery may solve that problem, as researchers were able to endow normal skin cells with pluripotent properties. These cells, known as induced pluripotent stem (iPS) cells, may or may not develop the same way as ESCs; it's currently under investigation.

If they do, creating a diseased iPS line for research will be as easy as getting a cheek swab from a person with the disease. Creating patient-specific stem cell lines, to avoid any potential immune rejection issues after treatment, will also be simple.

If you have more specific questions, feel free to ask.

Steven

[Lindox]

caitlin,
Hi. I am a more mature CC member. Disabled not by injury but disease. For over five decades.
Honestly I can't believe it will be 2008 in less than a month and people are still using wheelchairs, braces, crutches and still no treatments that restore/regenerate..CURE.

Will stemcell science accomplish this? We won't know unless we give it all we possibly can.
We have ethical standards that can and will be applied to this science.

There are some like Dr. Keirstead that are in the planning stage of a clinical trial to possibly BUY babies with SMA Type1 some time. Something they don't have much of. As many motor neuron diseases often are fast and fatal. These babies need this time so science can find more treatments. Without improvement they will die within a few months to a few years.

Would we already know if the cell therapy can buy them time if no bans were created in 2001? I dun't know. And I hope not.

A thirty year old friend of one of our members just recently died of spinal cord injury related issues.
Let's give it all a try.

Please advice your fellow students that going forward is a very good direction and ask them to please support federal funding for ALL stem cell and medical research. Thanks. And Welcome.

[WADDiE]

I support all stem cell research. A cure will come one day and NO ONE knows which type it will come from. We need funding into all types of stem cell research not just one in particular. i believe its already been proven to be helpful but more research needs to be done to really maximize it. It could be harmful but I won't be the guniea pig to find that out and possibly ruin my chances if a real cure is to come about.

You know where to find me if you want more info lil sis

[JGNI]

I support all stem cell research.

[okwjoe]

Hi Kaitlyn,

I am a dad of a son who is now a high school senior who at the age of 14 broke his neck while diving in our pool. He is now what is called an ASIA A C4 complete.. in layman's parlance he is an Tetraplaplegic and is only able to shrug his shoulders and move his arms at the shoulders.

As a side note ( Just to let you know, he is awaitng for Early Action on Early Action decisions from 6 colleges later this week and next, and later in the spring 2 from the Ivies.)

As a dad, I will gladly give up my life if that would make him
able to be able to just to be able to be physically self suffiicent. He also feels walking would be nice but using his hands would be okay for now.
I hope you can appreciate how we are desperate for a cure. I look at my boy who should be playing in his 4th year of Varsity Baseball, ALL-State Trumpet Player, driving a car, going out with his friends on outings and parties.. but he can't get into most of his friends home s because he is wheelchair. I have a question for you Kaityln in all honesty would you even consider going out with a boy like my son My heart breaks every day and I have to stifle back tears when I see young people doing things that he can't.

YES I SUPPORT Embryonic Stem Cell Research. But there morons in this country including our president who in august 2001, decided that important research that made this country the pre-eminant world power as it is now, should take a back seat to the thinking that using embryos not used from In vitro- fertilzation attepmts that were destined to thrown out in the red bags of hospital wastes is amoral. and outlawed on his own. anymore ESC's being used in federal funded research and he used his first veto of his wretched precidency to kill a bill that would fund research with restrictions . It was passed by both houses of Congress with big majorities. I TELL YOU thing.. it is amoral for a dad to wipe the butt of his 17 year old son, has to change his diaper when his catheter leaks and to watch my son stoically watch his friends do normal teenage things.
Secondly, our president cut hundreds of millions of dollars from the National Institute of Health budget on funding for Spinal Cord Reserch.

Third, ESC 's is only one of many therapies that may help with spinal cord injuries, but with other movement didsorders like mutilple scerosis, ALS,( Lou Gehrig' disease ) parkinison's disease, etc. but it takes money and since the large pharmacetical companies always take the position " research and development is expensive and they need a great product to recoup the monies spent on R& D. They reason that these unfortunate souls only number in the hundred of thousands, it is not economic feasible to waste monies on them. BUT IF somehow ESC's or somthng else could increase breast size to any size a women wants or make men have erections d like wood.. well then they would use ESc's for that.
Anyway just to give the idea that my son and probably many other peolpe like himself will support ANY therapy that would help them.

joe

[The mom]

Caitlyn,
Thank you for asking.
Yes, I completely support research using both embryonic and adult stem cell.

As a female, I have lost one egg a month for 40 years with the exception of the three years I was pregnant with my four children. I chose to “discard” 432 eggs. I would have gladly donated those eggs for research just as I have donated blood or bone marrow and some have given a kidney. In the same manner, many families use the services of fertility clinics to solve pregnancy issues and would like to help others by donating their extra eggs. Embryonic stem cell research can easily be provided for.

At present, there is a tremendous amount of research being completed trying to make an adult stem cell act like an embryonic stem …….. What does that say about the need for the characteristics of BOTH!! This is good! In the same manner, we don’t use one antibiotic, we use antibiotics specific to the need. We also continue to “invent” better antibiotics to overcome whatever more dangerous “bug” comes our way.

The EXTRAORDINARY part (not in a positive since) is that researchers are restricted in their options and limited in their funding!!! Literally, our government has required that if you use government funding, the researcher must use the limited number of federally approved lines and have no embryonic research outside this limited number of “healthy” lines in that lab. This requires U.S. scientists to raise funds to build and buy duplicate labs/buildings, with duplicate microscopes and vents, and syringes, and centrifuges, and vials, and solutions, and ……...……….. to handle embryonic research from non-contaminated lines. As a result, our best scientists/researchers are frequently not in their labs working toward cures for diabetes, spinal cord injury, Parkinson’s, MS and Alzheimer’s, etc., but are out on speaking engagements to ensure the solvency of their research! Under these circumstances, it is easy to see why in this day and age, this is taking soooooooooooo long!

Last comment: When you talk about embryonic vs adult stem cells, ask the individual if anyone in their family or anyone they know is affected by one of these problems. How much do they know about the daily lives of these individuals and their family members? In many cases, this has become a “it hasn’t happened to me or mine and I’m busy right now”- which is normal. It is easy not to know/understand the importance of your stem cell position when you have no experience with a problem that can be solved using stem cells. It is easy to say well there are only “X” number of children with diabetes or “X” number of spinal cord injuries, etc., but the stranglehold each one of these diseases or illnesses has on the rest of a family is profound. The ripple effect does not quit! …..It is so unfortunate when it “happens to me and mine!” I know their daily lives will change and I wonder if their perspectives change, too?

[Adrian]

As has been stated already, much stem cell research could be carried out using cells from spare IVF embryos that would otherwise be discarded. In my opinion the unethical and immoral thing to do is throw these cells away unused, when by using them for research they have the potential to help so many people live more normal lives and simply to help others survive.
Even if cloned embryos have to be created in order to affect treatments in the future, I believe that to be justified as in my opinion, whilst the embryo is still no more than a blastocyst it does not represent a human life. I am aware that that is a more controversial opinion that is harder to persaude those who disagree to change their minds about than the statement about not discarding unused embryos.
Adult stem cell research should also be pursued energetically and I can see no ethical objection to doing so.

[trainman]

I am a C2/3 quadriplegic nearly 23 years post injury. Meaning I have no feeling or movement below the neck and am unable to breath on my own.

I in no way support embryonic stem cell research. I DO support adult stem cell research. If you look to countries such as Portugal, ASC are already being used in human treatments which many Americans with SCI have gone for. It is not a complete cure at this point, but is much closer than the US.

If the United States had been investing research in ASC and not bothered with the ESC debate, we would very likely be doing these treatments already. Adult stem cells have been used for decades already and have shown that they work.

If ESC are actually shown to be useful, in how many decades, friends and myself have already said that we will not use them. These are friends that are as severely injured as I am. I very well hope to be able to breath on my own some day and have use of my arms and hands, but that possibility looks to be from adult, not embryonic stem cells.