IT'S YOUR SISTER BY THE WAY LOL! LOVE YOU SIS AND DONT LET ANYONE PUT YOU DOWN THEY ARE RATARDS AND DON'T KNOW SHIT ABOUT US......IM 110% BEHIND YOU ON ANY DECISION YOU MAKE LOVE YOU MUCHO!!!!!!!
First of all I am mother of a BABYBOY AND HEALTHY....Who is 8 months old February 23, 2010 I gave birth C-section. He was 8 pounds 15 oz 22 inches long.......I have Spinal Muscular atrophy. My pregnancy went wonderful I've seen "NORMAL" Healthy people have kids and had a lot of complications.....and i had no complications with my pregnancy and with the c-section. All the nurses and Doctors were amazed how well I did...... I am wonderful Mother I love my son He's my world. I do a lot for my son AND I DO TAKE CARE OF HIM!!!!! With a little help from his Daddy. So who are you people to Judge us on what we want and can have....Just cause my sister can't get pregnant like I did......ON HER OWN...... Then what's the difference of her needing a little extra help. And the doctor can't help her out because he's a Jerk. What I want to know is how many babies he has delivered That the Mom has gave up and the moms who have killed there babies. the moms who don't take care of there babies.....That's what i want to know. BECAUSE I KNOW IF HE HELPED MY SISTER OUT SHE'S WOULD BE A REALLY GOOD MOTHER. He said his medical field would be laughed at if he help my sister. That's wrong he is Judging my sister because of the wheelchair which is wrong!
First of all to the girl who has spinal bifida Who the hell gave you the right to Judge....I was 8 weeks pregnant and the doctor was telling me about if my child had SMA if i would get an abortion(THE WAY HE PUT IT EVEN MY MOM HEARD AND THINKS THE SAME) and to get the needle in my belly to check even though you can have a miscarriage...So basically he's telling me I don't belong here either because I'm in a wheelchair......So that's okay right..NO ITS NOT. ..When I was pregnant I went to a specialist about my baby seeing if he would get SMA......His answer was to me was since I have it I'm a carrier and if my boyfriend has the gene too then there is a big chance of having a baby with SMA too....and he also said to go get my boyfriend TESTED. (which came out negative) So that dropped down to a 1% chance my baby would have it. My baby is healthy and I thank god for that everyday but if he had it I would love him just as much........... I have it and I'm as normal as can be. I love my life even if I am in a wheelchair... My son is the love of my life and I will do what ever it take to make sure he is taken care of. I feed him, I give him baths everyday even 2-3 times I change his diaper and hold him and play with him. I'm there when he's sick, I'm there getting him to sleep at night..IM ALWAYS THERE HES WITH ME 24/7 EVEN WHEN I GO TO THE STORE OR THE DOCTORS HES WITH ME..... Just need a little extra help with him. And his Daddy helps too he does things I can't do like pick him up out of his crib or put him in the high chair so i can feed him or put him in the tub so I can give him a bath.... My boyfriend decided to get with me because he loves me and I'm just like everyone else... We decided we wanted a baby together because we love each other and wanted to have a family of our own....He tells me I'm a great Mother and My son and him are lucky to have me. SO WHO GIVES YOU THE RIGHT TO TELL MY SISTER EVERYTHING YOU JUST TOLD HER. YOU DON'T KNOW US I'm going to be 21 in a month I'm able to use my arms and do my hair and make up and take care of my son. I am not on a vent. I feed myself shower myself. I walked till I was about 10 years old I do a lot more then most people with SMA. I am a fighter I fight for what i believe in and I will not ever give up. And I will make sure my sister doesn't either she will fight till she gets what she wants. I KNOW FOR FACT SHE WILL BE A GREAT MOTHER. She is a wonderful Auntie and i know how long and bad she has wanting a child of her own. So don't tell us we are going to die seriously shut up you DON'T KNOW US YOU DON'T LIVE OUR LIFE....UNTIL THEN YOU CAN'T TELL US CRAP.......There are Normal people out there who are mothers fathers grandparents sisters brothers cousins aunts and uncles who loose there lives everyday.....No one knows when there going to die no one has a time limit on them. Everyone is different!
You can't do either.
it is illegal to solicit money without a license.
and they only give those to valid nonprofit corporations with IRS tax exempt status.
it is illegal for any nonprofit to give its benefits only to one person.
A foundation is a nonprofit corporation that gives money to other nonprofits.
It's so good to know people so concerned, and occuppied for the good of your family, and maybe for the good of a lot of other people like your daugther, having the same desease.
I'd love to help, but i am not american. I'm from Mexico, so i don't think any letter, opinion or idea i send to you would help at all.
But good luck on your figth. And love to your daugther. Remember to let everything in god's hands.
This one ^^ might be a very good resource
my son is disabled and has sma and a g tube does his dad still have every other wkend rights in texas?
Given the nature of your son's disability, it MIGHT be that you could ask that the visitation be suspended UNTIL his father is trained to care for his medical needs IF he is not already. You could also ask that some minimum standards be met in terms of what is available to your son in terms of access to a hospital, cleanliness in the home, etc. (But these things need to be met by you also.) Just because your son has a disability does not mean the father is not entitled to visitation - it simply means he should be able to meet a standard of care your son requires to be safe.
You could be perfectly healthy, and still come to an early end.
Stressing about the future will only cause more stress, angst, and anxiety, which will shorten anyone's life.
Chill, and try only to think about (and be grateful for) "today".
has a medical mal practice suit ever been won regarding spinal accessory neuropathy?
Your perception is on target. There definitely are statues of limitations and liability that protect medical institutions and insurance companies from such suits. The time is long past. Actually the clock starts ticking at the time of services performed, in other words, at the time of surgery. Do not give in or give up. We are made to be healthy, so in spite of doctors, get into your own regimen of exericise as simple as walking every day and good nutrition. That will go a long way to help your overall feelings of self-worth, control and general health.
Are other countries as obsessed over telling people what to do as America is?
I agree with you on most points. However, it's not wise to assume that what other people do doesn't affect someone else. So where should we draw the line? Should your neighbor be allowed to beat his wife or molest his child? Why not, it doesn't affect you? So it's illegal, it wasn't always illegal, and if that's the case, abortion used to be illegal too? Should we legalize child molestation now? According to you, who are we to say anything when it doesn't affect us.
I understand your point, it has gotten out of hand in some ways. And alcoholism is a disease that affects everyone around them. You should focus more on your bitterness and not be so selfish. Just b/c it doesn't affect you, doesn't mean it isn't wrong.
*I know you don't agree with child molestation. I said that to make a point. God bless. :o)
For the cookies, probably 50 cents each.
But with pieces of pie and cake, probably $1.50 or $2.
It might not seem like a lot at first but it gets added up quickly.
I really hope he is okay and you get enough money for the medical bills!
Good luck ♥
P.S. If they know it is for a good cause, they might be generous. Also have a little jar for donations of people don't want to buy anything but still want to give like, $10.
Between the categories of Gametic and Somatic mutations, where does an autosomal recessive mutation belong?
You are mixing two categories that do not overlap. SMA is an autosomal recessive genetic disease which tells you that the gene that is mutated occurs on a somatic chromosome - one of the numbered chromosomes, not on one of the sex chromosomes (X and Y). In this case, SMA is due to a gene on chromosome 5.
Gametic or somatic mutations describes what kind of cell the mutation occurs in when it first takes place. Somatic mutations are in body cells and mutations in these cells are not passed on to the next generation since somatic cells are not involved in forming egg or sperm. Gametic mutations take place in cells the will become egg or sperm (gametes) and so the mutation is passed on to the next generation.
Since SMA is due to a recessive mutation, both parents must have at least one copy of the mutation (heterozygotes) to pass it on unless it is a new gametic mutation from that individual. But since it is recessive, the parents could just be carriers with the original mutation occurring many generations earlier.
How do I go about placing an article in the newspaper to raise awareness?
First of all, my condolences on losing your child. It is amazing that you are able to even think of helping others at this time.
I would start with a letter to the editor, including the information you have stated here. I can't imagine why they wouldn't run it - but some papers have a policy where all letters must tie in to a recent news article or feature.
If your paper has a policy of asking members of the community to become guest contributors, they generally ask that you submit a few articles - and what you write on SMA might well run as an article later.
Finally, had you considered a wider audience, such as Dear Abby? Sometimes they will run notices such as yours, I seem to recall. You might also write to Dr. Peter Gott, if he's featured in your paper - or just write to him, period. But since it's a Q-A kind of thing, you would probably want to write with a question, such as "Dear Dr. Gott, I recently lost my infant child to SMA. Is there any way we can get information out to the public about ways to prevent this condition?"
Spinal Bulbar Muscular Atrophy, or Kennedy's disease for short, is a genetic defect that causes muscle cramps and progressive weakness due to degeneration of nerves in your brain spinal cord. Symptoms usually begin appearing between the ages of 30 and 50
Only men are affected by it, with Kennedy's disease in women extremely rare. They test your DNA in order to find the genetic defect that causes it.
A good online support group can be found at
hi.. i wanna know about the use and success rate of stem cell in spinal muscular atrophy..?
To be honest, I could not find any information on stem cells being used on humans to manage or treat spinal muscular atrophy.
Gene reviews [with a date of 2006] (http://www.genetests.org/query?dz=sma )
described several therapies, but none involving stem cells.
I also searched the following:
MedlinePlus..spinal muscular atrophy
going directly to the links Clinical Trials and ...
NINDS Spinal Muscular Atrophy Information Page
[ http://www.ninds.nih.gov/disorders/sma/sma.htm ]
I also tried searching PubMed (citations to medical literature)..
but it seems to be down this morning. PubMed [http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed ]is a free online product of the US National Library of Medicine, indexes medical articles from the 1950's to the present. Unfortunately, most of the
articles are not freely available on the Internet...
So, I am not sure if this is done on humans or not, cannot find
any supporting evidence...hopefully someone more knowledgeable than I will have a more definitive answer.
If for some strange reason, you think I could help out more,
don't hesitate to email me. I'll do my darnest.
What is Spinal Muscular Atrophy?
Spinal muscular atrophy (SMA) is a genetic, motor neuron disease caused by progressive degeneration of motor neurons in the spinal cord. The disorder causes weakness and wasting of the voluntary muscles. Weakness is often more severe in the legs than in the arms.
The childhood SMAs are all autosomal recessive diseases. This means that they run in families and more than one case is likely to occur in siblings or cousins of the same generation. Parents usually have no symptoms, but still carry the gene. The gene for SMA has been identified and accurate diagnostic tests exist. There are many types of SMA; some of the more common types are described below.
SMA type I, also called Werdnig-Hoffmann disease, is evident before birth or within the first few months of life. There may be a reduction in fetal movement in the final months of pregnancy. Symptoms include floppiness of the limbs and trunk, feeble movements of the arms and legs, swallowing and feeding difficulties, and impaired breathing. Affected children never sit or stand and usually die before the age of 2.
Symptoms of SMA type II usually begin between 3 and 15 months of age. Children may have respiratory problems, floppy limbs, decreased or absent deep tendon reflexes, and twitching of arm, leg, or tongue muscles. These children may learn to sit but will never be able to stand or walk. Life expectancy varies.
Symptoms of SMA type III (Kugelberg-Welander disease) appear between 2 and 17 years of age, and include abnormal manner of walking; difficulty running, climbing steps, or rising from a chair; and slight tremor of the fingers.
Kennedy syndrome or progressive spinobulbar muscular atrophy may occur between 15 and 60 years of age. Features of this type may include weakness of muscles in the tongue and face, difficulty swallowing, speech impairment, and excessive development of the mammary glands in males. The course of the disorder is usually slowly progressive. Kennedy syndrome is an X-linked recessive disorder, which means that women carry the gene, but the disorder only occurs in men.
Congenital SMA with arthrogryposis (persistent contracture of joints with fixed abnormal posture of the limb) is a rare disorder. Manifestations include severe contractures, curvature of the spine, chest deformity, respiratory problems, an unusually small jaw, and drooping upper eyelids.
Is there any treatment?
Treatment of all forms of SMA is symptomatic and supportive and includes treating pneumonia, curvature of the spine, and respiratory infections, if present. In addition, physical therapy, orthotic supports, and rehabilitation are useful. Genetic counseling is imperative.
What is the prognosis?
The prognosis for individuals with SMA varies depending on the type of SMA and the degree of respiratory function. The patient's condition tends to deteriorate over time, depending on the severity of the symptoms.
What research is being done?
The NINDS supports research to study gene function in SMA. Researchers have found the specific gene that, when mutated, causes SMA. Several animal models of the disease have been developed as well as tests that can determine SMA gene function. This allows scientists to screen drugs that may be useful in treating SMA.
The NINDS has established a model translational research program to accelerate the process of developing a safe and effective treatment for SMA. More information about this program is available at http://www.smaproject.org/.
Select this link to view a list of studies currently seeking patients.
1807 Libbie Avenue
Richmond, VA 23226
Families of Spinal Muscular Atrophy
P.O. Box 196
Libertyville, IL 60048-0196
Tel: 847-367-7620 800-886-1762
Spinal Muscular Atrophy Foundation
119 West 72nd Street
New York, NY 10023
Tel: 877-FUND-SMA (877-386-3762) 646-253-7101
March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
Tel: 914-428-7100 888-MODIMES (663-4637)
Muscular Dystrophy Association
3300 East Sunrise Drive
Tucson, AZ 85718-3208
Tel: 520-529-2000 800-344-4863
Kennedy's Disease Association
P.O. Box 1105
Coarsegold, CA 93614-1105
anyone kno anything about spinal muscular atrophy?????
This would depend on family history and ethnicity of person you are having a child with. If you are considering pregnancy and have SMA, I recommend that you request referral to a genetic counselor for a preconception counseling visit to discuss risks associated with your condition and pregnancy.
Genetics are complicated. But if two parents both carry a recessive gene. You would get :
1/4 chance the child is normal
2/4 chance the child is a carrier-has the recessive gene
1/4 chance the child has the trait or the disease
There are many recessive traits and diseases-blue eyes, muscular dystrophy's and many more.
There is genetic counseling if you are concerned about having a child with SMA.
There are 3 child type of SMA and one adult onset. I have treated children with all three types as a physical therapist. Please give some more information so I can give you more of an answer.
Do people who suffer from Spinal Muscular Atrophy tend to get depression?. .?
Anyone with a chronic medical problem is likely to suffer depression. Medical problems are depressing.
The problem comes when the original medical problem is misdiagnosed as depression, or the doctor imagines that the medical problem is caused by the depression, and not the other way around.
I've found this for you on wikipedia http://en.wikipedia.org/wiki/Spinal_muscular_atrophy
It would seem that it's always fatal, and the sooner the symptoms show up, the earlier the patient will die. It is genetic, and has to do with chromosone 5, which contains the survival neutron gene. There's a whole explanation for it on wikepedia.
SMA type I (what your friend's baby had), also known as severe infantile SMA or Werdnig Hoffmann disease, is the most severe, and manifests in the first year of life. This type generally onsets quickly and unexpectedly after birth; babies diagnosed with Type I SMA do not generally live past one year of age. Pneumonia is considered the ultimate cause of death due to deterioration of survival motor neurons; motor neuron death causes insufficient functioning of the major bodily organ systems, particularly respiratory (e.g. breathing, ridding of pooled secretions inside lungs).
I'm sorry for your friend's loss.
do people with spinal muscular atrophy live as long as someone without?
I think that there are some different types of SMA -- like type I, II, III. . .
For sure, folks with type I and usually type II, I think, will experience respiratory weakness fairly early in life.
www.oursmaangels.com says that SMA is the #1 genetic killer of children under 2.
So I guess the answer is no, the vast majority of people with SMA don't have a typical life expectancy.
Is my friend going to die? (Spinal Muscular Atrophy)?
Eventually the muscles involved in breathing weaken so that the afflicted person gets more and more pneumonias. Also, the cardiac muscle weakens to the point that it cannot sustain circulation.
No one can predict the length of life for your friend, but he has reached a critical time, and death may be close at hand.
Very sorry, but it's a terrible disease. Docs don't like to feel helpless, but teens with SMA often give us that feeling.
I have spinal muscular atrophy, and I'm wondering if I can get an online job without my GED?
some companies let you do tech support from home.
(with a VPN connection, and VOIP phone)
i have a laptop from the boss and only show up at the office once per 2 weeks and i'm able-bodied without an excuse. (i program)
No doubt the rigth boss will arrange teh same for you, if you are good enough. (make sure you are)
as for learning to make websites (using php, and maybe even mysql) this website ( http://www.w3schools.com/ ) is now your new God.
Spinal muscular atrophy (SMA) is a genetic disease that attacks nerve cells, called motor neurons, in your spinal cord. These neurons communicate with your voluntary muscles - the ones you can control, like in your arms and legs. As you lose the neurons, your muscles weaken. This can affect walking, crawling, breathing, swallowing and head and neck control.
SMA runs in families. Parents usually have no symptoms, but still carry the gene. Genetic counseling is important if the disease runs in your family.
There are many types of SMA, and some of them are fatal. Life expectancy depends on the type you have and how it affects your breathing. There is no cure. Medicines and physical therapy help treat symptoms.
does anyone know any intresting facts about spinal muscular atrophy?
Spinal Muscular Atrophy (SMA) is a term applied to a number of different disorders, all having in common a genetic cause and the manifestation of weakness due to loss of the motor neurons of the spinal cord and brainstem.
hope my info helps
How long can a child live with type one SMA (Spinal Muscular Atrophy)?
SMA is a genetic disease characterized by progressive muscle weakening and loss. Because the muscles controlling breathing are affected by the disease, SMA can cause premature death. Life expectancy of SMA tends to vary by SMA type, which is generally associated with age of onset of symptoms. Children diagnosed with SMA Type I may survive for up to two years or longer, depending on their individual strength. Children with moderate to mild forms of SMA (SMA Types II and III) generally live into adulthood and could have normal life expectancy. Good multidisciplinary care, including physical therapy, occupational therapy, respiratory therapy, and nutritional support, can improve quality and length of life for people with SMA and is recommended. Planning for medical emergencies is also strongly suggested.
Why is Spinal Bulbar Muscular Atrophy nicknamed Kennedy's disease?
Dr. William Kennedy is now retired, but still interested in spinal bulbar muscular atrophy (SBMA). Last winter, he wrote the Kennedy's Disease Association and commented, "
"I am amazed at the wonderful support that the KDA gives to the men and families affected by KD. The progress made by current research on animal models of KD and by therapeutic trials gives reason to hope that the disease that I described 40 years ago will finally be conquered."
Many people are still misdiagnosed today (most often as ALS). This link talks a little about that:
The genetics side of KD is interesting. In this link I try to explain it further: http://kennedysdisease.blogspot.com/2010/01/genetic-counseling-helps-to-answer-many.html
IGF-1 is a pretty exciting potential treatment for KD. If the next round of testing goes well, we could have a clinical trial by the end of the year. These two links explains it further: http://kennedysdisease.blogspot.com/2010/01/delaying-motor-neurone-disease.html
This is an interesting story about the need for educating care givers: http://kennedysdisease.blogspot.com/2009/09/education-and-awareness.html
There is quite a bit of information on the KDA web site.
I hope this helps.
I hope it doesn't sound like I'm offering cliques but here goes.... It is all about attitude, we live in a world that sets standards of physical beauty that is quite unrealistic for most of us. Keep the input positive by hanging around good friends, don't "try" boys, when you build your confidence they will be attracted to you.
Looks are important to us so when you look in the mirror and you are feeling low, just pick one thing you are really happy with and focus on that, do you have beautiful eyes, is your skin clear etc....?
Be involved and proud! Challenge yourself by believing you are beautiful and anyone who doesn't think so has the problem...not you. It is true that when you have an inner strength a lot of other things do not seem so important...believe. Build that confidence from the inside out.
Is it possible for a newborn to be diagnosed with Spinal Muscular Atrophy?
Usually nobody in the family even knows that they carry the gene. The way the check is through a blood test and what they are checking for is if the child is missing the Survival Motor Neuron. My precious baby boy had Spinal Muscular Atrophy and I can tell you we had no family histroy of it either. If somebody you know has it or you think might have it I promise I'll keep them in our prayers. God Bless