FAQ - Li-Fraumeni Syndrome
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What happens to people with down syndrome when they get old?


I wanted to know what happens to people with down syndrome when they get older. if their parents die, do they take care of themselves or do they get sent to an institution?
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Hello to all,
Thank you for asking this important question.
I appreciate the different answers that have been given by other members, however, I feel they are really not up to date. I would like to share more current information with you.
I am the Executive Director of the Denver Adult Down Syndrome Clinic. We see 50-60 adolescents and adults with Down syndrome in the Clinic each year. We also hold post- secondary adult education classes called ALIVE! (Ability Life skills Vitality Education!) for adults with Down syndrome year round. More than 40 students have participated in the ALIVE! Program since it began 2 years ago.
In my role overseeing both of these programs, I have met many adults with Down syndrome, and their families and care takers. I have also had the privilege of working with Dr. Barry Martin, the Clinic's Medical Director, and Heather Luehrs, our Clinical Social Worker. Through this hands on experience, as well as keeping up with medical and psychosocial literature, the "facts of life" for adults with Down syndrome have changed dramatically over the past twenty years, and continue to improve.
For example, the average life expectancy for adults with Down syndrome has reached beyond the mid fifties. This is due in large part to improved medical advances for all persons during that same time. Thankfully, it is no longer acceptable medical practice to "not treat or neglect" persons with developmental disabilities as it was many years ago. These health advantages, coupled with the public school educational system changes during the same time period (IDEA) has had a tremendous positive affect on both the longevity and quality of life for adults with Down syndrome today.
Now the challenge is that there needs to be adequate resources put in place to support this “new” generation of healthy, talented adults. This will mean that families and friends of persons with Down syndrome can do a great service to their cause by becoming “ambassadors” of the truth by providing people they talk to, or anyone in the general public, accurate, up-to-date, information on the “new” facts of life. Opening minds will lead to opening doors and resources. Changing opinions and perspectives is one of the most powerful ways to make strides in this process.
Today, many adults with Down syndrome are working, volunteer, living independently, or, semi-independently, very successfully. For example, several of our ALIVE! students use the city mass transit system to come and go to the classes held on DU's campus each week. They also ride the bus to and from their place of work. One of our student s drives a car. A few of our students have gone off to college in New Mexico, all on their own! The possibilities are really endless. Just as with any one, you need to assess each person’s gifts and talents and help to support them with a wide range of opportunities. The more we can educate and promote this information, the more doors will open, and who knows what the future will hold.
I also work with patients in the Clinic. They range form age 14 and up. The activity level and independent living skills vary, of course, but many enjoy life in their own apartments, or share their apartment/home with a roommate.
The choice of whether the family decides to have their child move out or live at home is made individually, considering many factors. It is true that adults with Down syndrome that continue to live in their parents home, will over time, have older caretakers. That is why it is really important for the families to think about, and plan ahead for the future, so that both the aging parents and the aging adult with Down syndrome each continue to enjoy a full life as each they age.
Many of the patients we take care of live with Host Home Providers. Usually the host home provider is younger than the adult's parents, and the parents or siblings remain actively involved in their loved ones lives. This arrangement affords the family a choice to extend the network of support needed for their loved one, while still having an active role in their lives, yet not being their sole responsibility. From my experience, it seems to be a very successful option.
As far as institutionalizing adults with Down syndrome, that is no longer done.
In closing, I would highly recommend reading a wonderful resource book called, Mental Wellness in Adults with Down syndrome, by Dennis McGuire, Ph.D & Brian Chicoine, M.D., both highly respected clinicians from the Chicago Area adult Down syndrome Clinic. The book gives a thorough overview of all aspects of wellness and health concerns that are more common for the adult Down syndrome population. It is a valuable resource for any family.  (+ info)

What is the difference between Asperger Syndrome and Asperger Disorder?


I was reading a book about people in history who could have AS. But the author says one person could have Asperger Disorder instead of Asperger Syndrome.
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Asperger disorder is another name for Asperger syndrome-they are one in the same:

Asperger syndrome ( also called Asperger's syndrome, Asperger's disorder, Asperger's or AS) is one of several autism spectrum disorders (ASD) characterized by difficulties in social interaction and by restricted, stereotyped interests and activities.
Hope this helps!!  (+ info)

What are ALL causes of Down Syndrome Diagnosis before a baby is born?


My brother is having a baby in a few months. His girlfriend called us up and tells us that the dr said the baby might have Down Syndrome...
I want to know if in any way, could it be brought on by the way she takes care of herself? By smoking weed or drinking alcohol? Please help me with this one...
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downs is caused by a genetic mishap, they have more chromosomes than we do.. its nothing that she could have prevented.. although sometimes the age of the woman can take part in birth defects and syndromes in a baby.. Usually they say if the woman is over 35, there are more risks.
smoking and drinking isnt good for the baby but really its going ot cause other problems with the child like possibly being slow or having medical problems in the immediate or long term after being born.  (+ info)

What is a syndrome where hands in feet in young children outgrow their bodies?


My cousin has a heart murmur and has to have surgery. The Doctors have also said that he has a syndrome which Im not sure the exact name but it's something where they have said his hands and feet will outgrow his body and his body will stop growing and his heart will overload and that he probaly won't live past 10 yrs old. I wanted to research it but I'm not sure the exact name of the syndrome to look it up.

Any help is greatly appreciated. I am currently pregnant and was told this was genetic?
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i dont know...marfan syndrom maybe?  (+ info)

What's the difference between being a sociopath and Asperger's syndrome?


I have heard a fair amount about Asperger's syndrome lately. How does it differ from being a sociopath?
Isn't the no feeling for others, no empathy a symptom of asperger's?
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Sociopaths lack the ability to feel empathy, guilt, and remorse (for the knowledge of hurting others). They essentially have no conscience and their sense of right and wrong, though they have the ability to know what society considers right and wrong, and they usually have the ability to acknowledge that others have this odd sense of emotion that they are lacking. The often tend to be experts at socializing, but to a sociopath, another human is really no different from an interactive object.

A person with Aspgerger's Syndrome can feel empathy, guilt, and remorse. The person with Asperger's Syndrome just does not have an innate ability to catch on to the rules of socialization. They also tend to have trouble picking up on subtle social cues.

So people with Asperger's Syndrome basically have a non-verbal communication deficit while sociopaths have a lack of ability to feel. They are two different things.  (+ info)

Piriformis Syndrome and sciatic nerve treatment, any recommendations?


I have piriformis syndrome,diagnosed two weeks ago and it's not improving, the dr says give it time. Does anyone have tried and true remedies for relief? Any ideas welcomed.
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Here is your alternative treatment answer. Almost all sciatica and piriformis are caused by inner stress/tension/anxiety and not because of a structural imbalance.
The treatment: pay attention to how you are creating inner stress with your thoughts and behaviors. For example: habitual worry and being overly self-conscious, having a controlling and perfectionist behavior, or holding in feelings like anger and resentment. All of these thought patterns and behaviors cause inner tension that our autonomic nervous system uses to activate a process called oxygen deprivation. Lack of oxygen and blood to muscle and nerve tissue causes pain symptoms that we feel and get diagnosed as sciatica, piriformis and back pain. So the key is to recognize when you are creating inner tension and then redirect out of the thoughts and behaviors that are the cause.
Hope this helps. I ended 3 years of piriformis with this treatment.

Monte Hueftle  (+ info)

What syndrome causes very slow aging process in children?


I saw some abc special about a girl with this syndrome. she was 15 years old, but her body was that of a 3-year old.
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http://www.youtube.com/watch?v=_lEjEXNhfqs  (+ info)

Is it normal to be afraid my baby will be born with down syndrome?


I am due in a few weeks and I am afraid my baby will be born with down syndrome, or something wrong with her. Is this intuition or is this just normal fears of expecting? Has anyone else experienced this?
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Your concern is completely normal. When my wife was pregnant, she worried about just about every medical condition you can think of. The fact that she's a doctor only made it worse because she knew about all sorts of other medical conditions most people wouldn't have thought to worry about.

The good news in this case is that testing for down syndrome is actually standard. It's part of the triple screen test they usually do somewhere between week 15 and 20. If you saw your OB/GYN during that time the test was probably done. (Do you remember them drawing blood from you?) If the tests came back normal, then there's probably nothing to worry about. If you don't remember the test being done, you can probably call your doctor's office and ask if they did a triple screen test and what the results were.

Congratulations to you in advance - may your child be born healthy and happy.  (+ info)

What kind of financial support is availsble for an adult with treacher collins syndrome?


A member of my family has treacher collins syndrome and currently does'nt have enough money to pay the surgery that is needed.This family member has a mild case,the eyes are small slant down slightly,no hearing loss,the main thing is how he feels about himself,society can be crule and not very understanding.Currently he lives in chicago so if anyone has any info please please reply.Thanks so much.
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I would try this site, looks to have some useful information

http://www.craniofacial.net/treacher_collins_syndrome.htm  (+ info)

Do people with down syndrome always have the physical characteristics to show it?


I know a 6 year old that has all the mental and emotional traits of down syndrome, but no physical characteristics. Does he have down syndrome? What else could it be?
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