Avery
Laura, Megan C., and Megan B.
Jillian and Baby Juliana
Brianna
Suzanna
Showing posts with label Turner's Syndrome. Show all posts
Showing posts with label Turner's Syndrome. Show all posts
Sunday, July 31, 2011
Wear Lilac for TS Awareness Day, July 2011
Avery
Laura, Megan C., and Megan B.
Jillian and Baby Juliana
Brianna
Suzanna
Monday, January 31, 2011
Turner Syndrome Awareness!
Butterflies are the symbol of HOPE for TS!
Avery and Turner Syndrome
Avery was diagnosed with TS before birth through an amniocentesis. She had a large cystic hygroma, which was supposed to prevent her from surviving, but it didn't. Because of her hygroma, Avery has a small, fatty patch of skin on the back of her neck. Now that she has grown, the patch is less noticeable. She has a low hair line, low-set ears, curved finger and toenails, and wider spaced nipples which are all traits of TS. Avery has cysts on her right kidney, and some kidney reflux, but both kidneys have functioned normally up to this point with no infection. She takes Bactrim, an antibiotic, daily to prevent infection from occurring. Avery was born with congenital heart defects- coarctation of the aorta and bicuspid aortic valve, along with some other complications. Her coarctation was repaired first, at 1 week old, and has been ballooned in the cath lab since. She also had valve replacement surgery at 7 months, to replace the abnormal valve. She takes heart medications, Digoxin-2 doses and Lasix daily.Avery is smaller than the average child. Due to her CHD, she was not on the normal growth scale until recently. Most kids with TS do not decline in growth until age 2. Avery will begin GH therapy in the upcoming summer to help her reach a more average height. She will take injections daily. Most girls with TS that do not take GH are under 5 feet tall. Due to her condition, Avery has gotten the Synagis (RSV) vaccine for the past 2 years. Avery has had no sight problems as of yet, and her hearing has not been affected. Although her hearing hasn't been affected, Avery had tubes placed in her ears to relieve fluid which could cause hearing loss. Many TS girls have problems with ear infections, but so far, Avery has only had 2. Avery sees a regular pediatrician, an opthalmologist, an endocrinologist, an ENT, a cardiologist, a geneticist, and a urologist regularly.
Those are Avery's health facts, but this is who she really is....
Avery is a happy, funny, healthy, smart, loving, beautiful, red-headed, hard-headed, energetic, dramatic, dancing, petite little girl who was created for great things! Her smile will melt your heart. She is a miracle to behold, and she lights up our life. She has strengthened our faith, shown us the meaning of endurance, and given us more happiness than we have ever felt. She is just a normal toddler, exploring, testing, growing and learning. The only difference one may notice is that she is small for her age. She has hit her milestones, and has no physical handicaps that prevent her from doing anything normal.
Avery is so much more than a child with TS, as are all the girls born with this syndrome. She is special, because she is a child of God, formed by His hand...just like every child. While things like daily GH injections, learning difficulties, further heart issues, self-esteem, and infertility seem scary at times, I know that God has her in His hands. He's done an awesome job so far, so who am I not to trust? We are blessed to have amazing doctors and nurses, who are knowledgeable, proactive, and caring. Her geneticist even stated that with all of the medical advances we have now, who knows what they will be able to do by the time she wants to have a child of her own. Avery is expected by everyone, to have a normal, healthy life, and that makes this TS/CHD and just plain old mommy happy beyond words!
Note: Just as every child is different, every child born with TS is different. There are many different ways in which a child can be affected. This is based on our personal circumstances. ♥
"Crush the Ignorance of Turner's Syndrome!"
Help celebrate TS Awareness month in February with the Turner Syndrome of the United
States' theme "Short Happens!"
What is Turner Syndrome?
Turner Syndrome is a non-inherited chromosomal condition that affects girls and women with common conditions such as:
*Delayed puberty
*Heart defects
*Puffy hands and feet
*Learning Difficulties (i.e. math) with normal intelligence
*Kidney, thyroid, and liver concerns
*Hearing loss
*Frequent ear infections
*Social difficulties
*Infertility due to nonfunctional ovaries
*Scoliosis
Plus common physical traits such as:
*Short stature
*Many moles
*Receding lower jaw
*Low-set ears
*Triangular face
*Webbed neck
Turner Syndrome can be diagnosed throughout the lifespan including adulthood with a test called a karyotype. Currently, 50% of the girls are NOT diagnosed until their pre-teen or teen years. Advances such as growth hormone and estrogen therapy have improved the lives of girls and women with TS.
***If you know a girl or woman with the above symptoms, PLEASE encourage her to get tested.***
For more information, please visit www.turnersyndrome.org
The Turner Syndrome Society creates awareness, promotes research, and provides support for all persons touched by TS. Find out more about Turner Syndrome, then tell a friend, family member, a business associate or a health care professional and help us CRUSH THE IGNORANCE OF TURNER SYNDROME. We can't do it without you!
TS Angels!
Having TS does have its difficulties, but these girls are showing the world what it means to overcome and conquer! Aren't they beautiful?
Miss Rosie
Miss Colleen
Miss Rosie F.
Miss Jennifer
Miss Avery
Did you know?
According to the American Academy of Pediatrics...The birth prevalence of Turner Syndrome has been estimated to be from 1 in 2000 to 1 in 5000 live births. Approximately 1% to 2% of all conceptuses have a 45,X chromosome constitution. The majority (99%) of these spontaneously abort, usually during the first trimester of pregnancy. With the more frequent use of ultra-sonography, it is recognized that some pregnancies with a fetal 45,X chromosome constitution progressing into the second trimester are associated with nuchal cysts, severe lymphedema, or hydrops fetalis. These pregnancies are associated with a high frequency of fetal death.
What a miracle you TS girls and ladies are!
Turner Syndrome Awareness Month, February 2011
What a miracle you TS girls and ladies are!
Turner Syndrome Awareness Month, February 2011
Friday, January 21, 2011
Thursday, November 18, 2010
What a Story!
Dr. Catherine Ward (center) , a geneticist at Akron Children's Hospital in Akron, Ohio, laughs with Joleen Viront (left) and Jennifer Stein, both genetic counselors on Nov. 1, 2007. The 4-foot, 8-inch geneticist has Turner syndrome, a genetic disorder that causes short stature. (Lew Stamp/Akron Beacon Journal)
Doctor's size is a big benefit
Geneticist tells parents not to limit daughters
By Cheryl Powell
Beacon Journal medical writer
Dr. Catherine Ward might be small in stature, but she's definitely not short on ambition and dedication to helping patients.
After all, the 4-foot, 8-inch geneticist at Akron Children's Hospital knows firsthand the struggles that can go along with having a genetic disorder.
During her childhood, her own doctor became suspicious about what Ward now jokingly refers to as her ''lack of growth curve'' and recommended testing to find out the reason for her failure to grow.
Consequently, Ward was diagnosed at age 7 with Turner syndrome, a chromosomal condition that affects about one in every 2,000 to 2,500 girls and women.
Females with Turner syndrome are missing all or part of their second sex chromosome. Those with the syndrome usually are short, experience ovarian failure and infertility and can suffer from other health problems.
But Ward hasn't let her medical condition stop her from becoming a doctor, as well as a respected national leader for the thousands of girls and women who share her diagnosis.
Starting in January, Ward will take over as president of the Turner Syndrome Society of the United States. The national nonprofit group is dedicated to creating awareness, promoting research and providing support for patients and families.
''This has just been part of my life,'' Ward said of her genetic condition. ''I think I have pretty much tried to make it part of my life but not an overwhelming issue.
''We're women who do everything
we want to do, for the most part.''
In her national role as a spokeswoman and advocate for Turner syndrome, Ward wants to get more medical experts involved in the organization and its efforts.
''One of the things I'd love to do — and I feel I'm in a unique position to do — is expand the professional participation,'' she said.
Syndrome symptoms
Turner syndrome first was recognized by Dr. Henry Turner, who published a report in 1938 about seven girls who shared a number of features.
Though every patient differs, the majority of girls and women with Turner syndrome are less than 5 feet tall and unable to conceive a baby without special medical treatment.
Other features can include arms that turn out slightly at the elbow, webbing of the neck, low hairline in the back, a narrow and high-arched palate, broad chest, and narrow fingernails and toenails that point upward.
Affected girls and women also are at increased risk for heart defects, high blood pressure, kidney problems, osteoporosis, hypothyroidism, immune system problems, ear infections and hearing loss.
The syndrome does not affect intelligence, though some females can have specific learning disabilities in nonverbal areas.
Some patients are diagnosed before or shortly after birth, while others aren't diagnosed until they fail to grow as children, Ward said. Others don't discover they have the disorder until they fail to begin menstruating during adolescence or they abruptly stop having periods at an early age because of ovarian failure.
Hormone treatment
When Ward was diagnosed with the chromosomal disorder in the early 1980s, growth hormone therapy was considered experimental and rarely used, she said.
Today, most girls are treated with growth hormone to help them grow faster and potentially reach a normal adult height of more than 5 feet.
''Growth hormone is now a standard of care for Turner syndrome,'' she said.
Many Turner syndrome patients also require estrogen therapy to start puberty.
Ward, 34, joined the genetics department at Children's about two years ago after completing her genetics fellowship at the University of Texas Health Science Center in Houston.
In her role at Children's, Ward works with people who are being tested and treated for a variety of genetic disorders.
She also serves on the multi-disciplinary team for the hospital's skeletal dysplasia clinic, where, she said with a grin, she works regularly with patients ''who are smaller than me.''
Patients often look at her and say with excitement, ''Hey, you're little, too!''
If people ask, she said, she'll talk about her condition, especially with families who are discovering their daughter has Turner syndrome.
''I really feel like that's helpful,'' she said.
Her own experiences have prompted her to encourage parents not to limit young patients who are diagnosed with genetic disorders.
Helping parents
Ward's parents (both educators) held her to the same high standards that they set for her siblings and expected her to excel, she said.
''I think that was something that's been very important to me and I talk about a lot with Turner syndrome parents,'' she said.
Lori Jones and her husband, Ken, are taking that approach with their 12-year-old daughter, Whitney, who was diagnosed with Turner syndrome about two years ago.
''We tell her, don't let the frustration bother her,'' Lori Jones said. ''She can do whatever she wants.''
The Cuyahoga Falls couple and their daughter attended an inaugural Turner syndrome regional conference that Ward helped organize at Children's in January. Another conference is planned for next January.
Gaining acceptance
''Having her here is helpful,'' Lori Jones said of Ward, ''because she's going to bring awareness.''
Whitney said she enjoyed meeting Ward and others with Turner syndrome.
''I felt it was good to talk with her, to know that I'm not the only person who has it,'' Whitney said.
The seventh-grader at Immaculate Heart of Mary said it used to bother her when other children made fun of her because she's short.
Whitney is about 50 inches tall. The average height for a girl her age is at least 60 inches, or about 5 feet tall.
''As I got older, I learned to accept myself more,'' Whitney said. ''Everyone is special in their own way. We just need to accept ourselves for who we are and don't care what other people think.''
--------------------------------------------------------------------------------
Cheryl Powell can be reached at 330-996-3902 or chpowell@thebeaconjournal.com.
Friday, July 30, 2010
Wear Lilac Friday, July 30 to Support TS Awareness!
Avery and Mommy and Lilac/Purple!
Sweet Addison Paul wore Lilac for Avery today- too stinkin' cute!
The Adorable Rosie in her Lilac!
Avery's Grammy wore Lilac too!
Avery and I wore our Lilac today in honor of TS Awareness! (Well, she wore purple.)Did you wear yours??? If anyone has any pics, email them so I can post them please!
See this Link on FB:
http://www.facebook.com/home.php?#!/event.php?eid=133013253401342&ref=ts
Wednesday, July 28, 2010
TS Presentation to 3rd Grade Class
I found this online, and thought it was neat.
Turner Syndrome Class Presentation and Fact Sheet
Posted Oct 04 2009 11:12pm
A fellow mom of a daughter with Turner Syndrome shared a class presentation that she gave her daughters school and I would like to share it here as well and she has given me permission to do so.
_________________________________________
Below is the presentation we shared with the 3rd grade classes at Madisyn's school. If you think this is something that may help your child, feel free to copy and paste and edit as needed. This was a long thought out process. We knew when the time was right to share....Madisyn's teacher was very supportive feeling it would be beneficial, and it was. It may not be for everyone, but it was a great experience for Madisyn and her classmates.
Blessings, Jen
(Jen)
Raise your hand if you or someone
you know has allergies?
Raise your hands if you or someone
you know has asthma?
(Madisyn)
Raise your hand if you or someone you know wears glasses or
has braces on their teeth?
We all know someone who has something right?
(Jen)
Raise your hand if you know someone
who has Turner Syndrome?
(Madisyn)
My name is Madisyn, and if you know me you do know someone
who has Turner Syndrome.
(Jen)
Madisyn was diagnosed with TS when she was 2 days old.
Not only am I Madisyn and Blakes mom, but I am the President of the Chicago area TS Society. Several families and I are publishing a book. Boys can not have TS, so this is why we decided the name of the book would be called "The Turner Girl Club.
(Madisyn)
I have many friends who also have TS just like me. We just had a spa event where we got to have our nails and make up done with our moms.
I brought some pictures of me and my friends and our moms to show you.
(Jen)
When Madisyn was born her cry was not very loud and her feet were swollen. This led doctors to check her blood pressure and do tests on Madisyn's heart. Doctors noticed Madisyn has 2 valves in
her heart valve instead of 3 like you and I have.
She also had a narrowing of her aorta (our Aorta is the
main vessel of our heart). (Bring a visual picture of heart)
These heart findings led doctors to do a special blood test which told us Madisyn had TS.
Madisyn is our miracle.
TS occurs in 1 out of 2000 baby girl births. (show bowl of 20000 pastel M&M's. "if all these m&m's were girls, only one would have TS )
(4 bags = 2000)
Some of you may notice Madisyn does not hang from the monkey bars outside, or that she may not keep up during running activities in comparison to classmates or that she has a water bottle with at her desk. Her doctor wants Madisyn to stay hydrated which means to keep enough fluids in her body to prevent fainting episodes. He also does not want her to do activities that cause extreme exhaustion or lift really heavy things. It might put too much strain on her heart. Instead of doing really strenuous activities, Madisyn does get to ride horses once a week at a place in Maple Park.
Madisyn sees her cardiologist(can you guys say cardiologist?) This is Madisyn's doctor who monitors her heart, once a year. He says she is doing great. She can run and play just like other kids, but knows when she needs to rest. Madisyn takes a pill every day to help slow her heart rate down, and keep her blood pressure in check.
(Miss Terry) (Ms. Lewis or Ms. Ricker)
How many of you know different kinds of language within the English language? Ie. Sign language, brail.
Does anyone know what non-verbal/body languag is? Mrs. Campbell and I are going to show you examples of non-verbal/body language.
(Miss Terry) (Ms. Lewis or Ms. Ricker)
Many people who have TS are very good at reading and comprehending books, and excel at vocabulary words. In fact, Madisyn's mom told me Madisyn can be listening to a book in her CD player and physically read a different book at the same time, and know everything that is going on in both. Pretty amazing huh?
(Jen)
Sometimes girls who have Turner Syndrome have difficulty understanding body language and peoples facial expressions. Things like crossing your arms, rolling your eyes or making a face at Madisyn can be very hard for her to interpret. It is best to use nice words and talk to Madisyn since vocabulary and verbal language is one of her strengths.
(Miss Terry, Ms. Lewis or Ms. Ricker)
Some girls and women who have TS have difficulty with balance
and judging how close or far they are to someone or something.
If Madisyn is standing too close to you and you would like her
to back up, how would you let her know what you want? Would you back away from her crossing your arms, or rolling your eyes? Or would you let her know what you want by asking her with nice words if she can back up a bit?
(Jen)
Sometimes girls who have TS feel awkward in social settings…..like when its appropriate to join in a conversation, to be careful not to interrupt in a conversation. It is admirable if you are able to notice when someone may be feeling awkward and to try to talk them through a situation and include that person.
(Jen)
When Madisyn was born she was 18 inches long. This is a bit smaller than
most babies. Madisyn has consistently been smaller than other kids her age.
Girls who have TS have trouble growing on their own. Every three months, Madisyn see's a doctor called an endocrinologist. Can you guys say Endocrinologist? This is a doctor who tells her how much medicine she needs to help her grow.
When we were very first informed of Madisyn's diagnosis after the doctor fully explained what TS was all about, he ended his conversation telling us the key to Madisyn's life will be unconditional love and acceptance. Isn't that what we all want? Whether we wear glasses or braces, whether we are tall, short, heavier or skinny and no matter what the color of our skin, we all just want to be accepted.
(Madisyn)
Every night before bed my mom or dad give me a shot. This medicine goes in my leg or hip. Some times it stings, but I count through it, stay brave and don't cry. I know it is helping me grow.
My mom and dad have taught me we are all different. It's what
makes life interesting. If everyone were the same, it would be boring.
My parents teach my brother and I that it is what is on the inside that really counts.
((((at the end of our presentation, we asked questions to see how much the students took in....it was amazing how much they understood. We handed out a small piece of candy to each student and a feathered butterfly - TS logo. We also gave each student a paper summerizing our presentation to take home and share with their families - all 3 classes were very accepting and Madisyn's teacher said she has noticed a difference in how students communicate with Madisyn. The school would like us to share this with all of the 4th grade classes at all 4 schools next year if Madisyn is okay with that.....this might be a good thing since they will all be together in junior high which are the toughest years in my opinion))))
And the fact sheet that they passed out which of course doesn't list everything or in detail as it is for children who dont need to know certain facts that may cause teasing (such fertility, menstruation etc.)
Turner Syndrome - Some Facts
Turner Syndrome = girls only. 1 out of 2000 girls has Turner Syndrome.
(this means that one m&m out of 5 huge bags of m&m which would have to be all girls would have TS)
Madisyn has many friends who have Turner Syndrome just like her.
Some characteristics of Turner Syndrome include
Specific heart problems - Madisyn has a bicuspid aortic valve instead of a tricuspid valve. (2 valves instead of 3) Madisyn sees her heart doctor (Cardiologist) to monitor her heart. Girls who have TS have an increased risk for high blood pressure. Madisyn takes a pill each day to keep her blood pressure and heart rate in check. No monkey bars or heavy lifting. Madisyn knows when she needs to rest.
Slow growth and/or short stature - The most common feature of TS is short stature. Madisyn just started taking medicine to help her grow. Her mom or dad give her a shot every night. She is brave and knows it will help her grow taller like her classmates. Madisyn sees a doctor called an Endocrinologist who helps monitor her growth.
Excellent verbal skills and reading abilities….Girls who have TS usually excel in their verbal skills. Madisyn can read one book and listen to a completely different book on CD and know what is happening in both.
Non-Verbal Language Difficulties - Non-verbal language poses a challenge to many girls who have TS. Madisyn has difficulty understanding people's body language and/or facial expressions. This can cause problems in social settings. Sometimes it is difficult for girls who have Turner Syndrome to join in on a conversation or they may interrupt a conversation without meaning to. It is best to use nice words to communicate with Madisyn since verbal language is one of her greatest strengths, and help them feel included.
Spatial-Temporal Processing Difficulties - imagining objects in relation to each other is often difficult for girls who have Turner Syndrome. This can cause problems with balance, solving some math problems as well as understanding a persons personal space. Sometimes Madisyn may stand very close to you without realizing she is in your space. It is best to ask her with nice words to please step back a bit.
The Butterfly is the United States Turner Syndrome Society logo.
Madisyn's mom Jennifer was the parent chair of the TSSMC. (Turner Syndrome Society of Metropolitan Chicago) She is proud of Madisyn. She and other families are in the process of publishing a book called "The Turner Girl Club".
Madisyn, her parents and members of the Turner Syndrome Society of Chicago thank you for helping us bring awareness to Turner Syndrome by sharing this paper with your family
Turner Syndrome Class Presentation and Fact Sheet
Posted Oct 04 2009 11:12pm
A fellow mom of a daughter with Turner Syndrome shared a class presentation that she gave her daughters school and I would like to share it here as well and she has given me permission to do so.
_________________________________________
Below is the presentation we shared with the 3rd grade classes at Madisyn's school. If you think this is something that may help your child, feel free to copy and paste and edit as needed. This was a long thought out process. We knew when the time was right to share....Madisyn's teacher was very supportive feeling it would be beneficial, and it was. It may not be for everyone, but it was a great experience for Madisyn and her classmates.
Blessings, Jen
(Jen)
Raise your hand if you or someone
you know has allergies?
Raise your hands if you or someone
you know has asthma?
(Madisyn)
Raise your hand if you or someone you know wears glasses or
has braces on their teeth?
We all know someone who has something right?
(Jen)
Raise your hand if you know someone
who has Turner Syndrome?
(Madisyn)
My name is Madisyn, and if you know me you do know someone
who has Turner Syndrome.
(Jen)
Madisyn was diagnosed with TS when she was 2 days old.
Not only am I Madisyn and Blakes mom, but I am the President of the Chicago area TS Society. Several families and I are publishing a book. Boys can not have TS, so this is why we decided the name of the book would be called "The Turner Girl Club.
(Madisyn)
I have many friends who also have TS just like me. We just had a spa event where we got to have our nails and make up done with our moms.
I brought some pictures of me and my friends and our moms to show you.
(Jen)
When Madisyn was born her cry was not very loud and her feet were swollen. This led doctors to check her blood pressure and do tests on Madisyn's heart. Doctors noticed Madisyn has 2 valves in
her heart valve instead of 3 like you and I have.
She also had a narrowing of her aorta (our Aorta is the
main vessel of our heart). (Bring a visual picture of heart)
These heart findings led doctors to do a special blood test which told us Madisyn had TS.
Madisyn is our miracle.
TS occurs in 1 out of 2000 baby girl births. (show bowl of 20000 pastel M&M's. "if all these m&m's were girls, only one would have TS )
(4 bags = 2000)
Some of you may notice Madisyn does not hang from the monkey bars outside, or that she may not keep up during running activities in comparison to classmates or that she has a water bottle with at her desk. Her doctor wants Madisyn to stay hydrated which means to keep enough fluids in her body to prevent fainting episodes. He also does not want her to do activities that cause extreme exhaustion or lift really heavy things. It might put too much strain on her heart. Instead of doing really strenuous activities, Madisyn does get to ride horses once a week at a place in Maple Park.
Madisyn sees her cardiologist(can you guys say cardiologist?) This is Madisyn's doctor who monitors her heart, once a year. He says she is doing great. She can run and play just like other kids, but knows when she needs to rest. Madisyn takes a pill every day to help slow her heart rate down, and keep her blood pressure in check.
(Miss Terry) (Ms. Lewis or Ms. Ricker)
How many of you know different kinds of language within the English language? Ie. Sign language, brail.
Does anyone know what non-verbal/body languag is? Mrs. Campbell and I are going to show you examples of non-verbal/body language.
(Miss Terry) (Ms. Lewis or Ms. Ricker)
Many people who have TS are very good at reading and comprehending books, and excel at vocabulary words. In fact, Madisyn's mom told me Madisyn can be listening to a book in her CD player and physically read a different book at the same time, and know everything that is going on in both. Pretty amazing huh?
(Jen)
Sometimes girls who have Turner Syndrome have difficulty understanding body language and peoples facial expressions. Things like crossing your arms, rolling your eyes or making a face at Madisyn can be very hard for her to interpret. It is best to use nice words and talk to Madisyn since vocabulary and verbal language is one of her strengths.
(Miss Terry, Ms. Lewis or Ms. Ricker)
Some girls and women who have TS have difficulty with balance
and judging how close or far they are to someone or something.
If Madisyn is standing too close to you and you would like her
to back up, how would you let her know what you want? Would you back away from her crossing your arms, or rolling your eyes? Or would you let her know what you want by asking her with nice words if she can back up a bit?
(Jen)
Sometimes girls who have TS feel awkward in social settings…..like when its appropriate to join in a conversation, to be careful not to interrupt in a conversation. It is admirable if you are able to notice when someone may be feeling awkward and to try to talk them through a situation and include that person.
(Jen)
When Madisyn was born she was 18 inches long. This is a bit smaller than
most babies. Madisyn has consistently been smaller than other kids her age.
Girls who have TS have trouble growing on their own. Every three months, Madisyn see's a doctor called an endocrinologist. Can you guys say Endocrinologist? This is a doctor who tells her how much medicine she needs to help her grow.
When we were very first informed of Madisyn's diagnosis after the doctor fully explained what TS was all about, he ended his conversation telling us the key to Madisyn's life will be unconditional love and acceptance. Isn't that what we all want? Whether we wear glasses or braces, whether we are tall, short, heavier or skinny and no matter what the color of our skin, we all just want to be accepted.
(Madisyn)
Every night before bed my mom or dad give me a shot. This medicine goes in my leg or hip. Some times it stings, but I count through it, stay brave and don't cry. I know it is helping me grow.
My mom and dad have taught me we are all different. It's what
makes life interesting. If everyone were the same, it would be boring.
My parents teach my brother and I that it is what is on the inside that really counts.
((((at the end of our presentation, we asked questions to see how much the students took in....it was amazing how much they understood. We handed out a small piece of candy to each student and a feathered butterfly - TS logo. We also gave each student a paper summerizing our presentation to take home and share with their families - all 3 classes were very accepting and Madisyn's teacher said she has noticed a difference in how students communicate with Madisyn. The school would like us to share this with all of the 4th grade classes at all 4 schools next year if Madisyn is okay with that.....this might be a good thing since they will all be together in junior high which are the toughest years in my opinion))))
And the fact sheet that they passed out which of course doesn't list everything or in detail as it is for children who dont need to know certain facts that may cause teasing (such fertility, menstruation etc.)
Turner Syndrome - Some Facts
Turner Syndrome = girls only. 1 out of 2000 girls has Turner Syndrome.
(this means that one m&m out of 5 huge bags of m&m which would have to be all girls would have TS)
Madisyn has many friends who have Turner Syndrome just like her.
Some characteristics of Turner Syndrome include
Specific heart problems - Madisyn has a bicuspid aortic valve instead of a tricuspid valve. (2 valves instead of 3) Madisyn sees her heart doctor (Cardiologist) to monitor her heart. Girls who have TS have an increased risk for high blood pressure. Madisyn takes a pill each day to keep her blood pressure and heart rate in check. No monkey bars or heavy lifting. Madisyn knows when she needs to rest.
Slow growth and/or short stature - The most common feature of TS is short stature. Madisyn just started taking medicine to help her grow. Her mom or dad give her a shot every night. She is brave and knows it will help her grow taller like her classmates. Madisyn sees a doctor called an Endocrinologist who helps monitor her growth.
Excellent verbal skills and reading abilities….Girls who have TS usually excel in their verbal skills. Madisyn can read one book and listen to a completely different book on CD and know what is happening in both.
Non-Verbal Language Difficulties - Non-verbal language poses a challenge to many girls who have TS. Madisyn has difficulty understanding people's body language and/or facial expressions. This can cause problems in social settings. Sometimes it is difficult for girls who have Turner Syndrome to join in on a conversation or they may interrupt a conversation without meaning to. It is best to use nice words to communicate with Madisyn since verbal language is one of her greatest strengths, and help them feel included.
Spatial-Temporal Processing Difficulties - imagining objects in relation to each other is often difficult for girls who have Turner Syndrome. This can cause problems with balance, solving some math problems as well as understanding a persons personal space. Sometimes Madisyn may stand very close to you without realizing she is in your space. It is best to ask her with nice words to please step back a bit.
The Butterfly is the United States Turner Syndrome Society logo.
Madisyn's mom Jennifer was the parent chair of the TSSMC. (Turner Syndrome Society of Metropolitan Chicago) She is proud of Madisyn. She and other families are in the process of publishing a book called "The Turner Girl Club".
Madisyn, her parents and members of the Turner Syndrome Society of Chicago thank you for helping us bring awareness to Turner Syndrome by sharing this paper with your family
Sunday, July 25, 2010
Help us with TS Awareness- Friday, July 30!
Please wear lilac (if no lilac in your closet, may be a shade of purple?) on Friday in honor of those living with Turner's Syndrome to raise awareness of TS! Avery and I will be wearing ours!! If you take pics, be sure to send them to me for posting!! Let's get the word out!!
Wednesday, July 21, 2010
Information on Turner's Syndrome
Turner syndrome (TS) is a medical disorder that affects about 1 in every 2,500 girls. Although researchers don't know exactly what causes Turner syndrome, they do know that it's the result of a problem with a girl's chromosomes (pronounced: krow-muh-soamz).
Most girls are born with two X chromosomes, but girls with Turner syndrome are born with only one X chromosome or they are missing part of one X chromosome. The effects of the condition vary widely among girls with Turner syndrome. It all depends on how many of the body's cells are affected by the changes to the X chromosome.
Girls with Turner syndrome are usually short in height. Girls with Turner syndrome who aren't treated for short stature reach an average height of about 4 feet 7 inches (1.4 meters). The good news is that when Turner syndrome is diagnosed while a girl is still growing, she can be treated with growth hormones to help her grow taller.
In addition to growth problems, Turner syndrome prevents the ovaries from developing properly, which affects a girl's sexual development and the ability to have children. Because the ovaries are responsible for making the hormones that control breast growth and menstruation, most girls with Turner syndrome will not go through all of the changes associated with puberty unless they get treatment for the condition. Nearly all girls with Turner syndrome will be infertile, or unable to become pregnant on their own.
Other Effects Turner Syndrome Can Have
A number of other health problems occur more often in girls with Turner syndrome, including kidney problems, high blood pressure, heart problems, overweight, hearing difficulties, diabetes, and thyroid problems. Some girls with the condition may experience learning difficulties, particularly in math. Many have a difficult time with tasks that require skills such as map reading or visual organization.
In addition to short stature and lack of sexual development, some of the other physical features commonly seen in girls with Turner syndrome are:
•a "webbed" neck (extra folds of skin extending from the tops of the shoulders to the sides of the neck)
•a low hairline at the back of the neck
•drooping of the eyelids
•differently shaped ears that are set lower on the sides of the head than usual
•abnormal bone development (especially the bones of the hands and elbows)
•a larger than usual number of moles on the skin
•edema or extra fluid in the hands and feet
Because Turner syndrome can affect how a girl looks and develops, some girls may have problems with body image or self-esteem.
People with TS are all different. Some may have many physical differences and symptoms, whereas others experience only a few medical problems. With early and appropriate medical care and ongoing support, most people with TS can lead normal, healthy, and productive lives.
Diagnosing Turner Syndrome
Girls with Turner syndrome are usually diagnosed either at birth or around the time they might be expected to go through puberty. If a baby girl has some of the signs of Turner syndrome, a doctor will usually order a special blood test called a karyotype. The test counts the number of chromosomes and can identify any that are abnormally shaped or have missing pieces. In some cases, there are no recognizable signs that a girl has the condition until she reaches the age at which she would normally go through puberty.
If the karyotype blood test reveals that a girl has Turner syndrome, her doctor may order additional tests to check for problems with the kidneys, heart, hearing, and other problems that are often associated with Turner syndrome.
Treating Turner Syndrome
Because Turner syndrome is a condition that is caused by a chromosomal abnormality, there's no specific cure. However, scientists have developed a number of treatments that can help correct some of the problems associated with the condition — such as growth problems — and researchers are constantly looking into new forms of treatment.
Growth hormone treatment can improve growth and influence a girl's final adult height. In fact, in many cases, the treatment can help many girls with Turner syndrome reach a final height in the average range, especially if treatment is started early enough in childhood.
Another treatment for Turner syndrome is estrogen replacement, which helps the girl develop the physical changes of puberty, including breast development and menstrual periods. This treatment is often started when a girl reaches about age 12 or 13.
And a technique called in vitro fertilization can make it possible for some women with Turner syndrome to become pregnant. A donor egg can be used to create an embryo, which is then put into the uterus (womb) of the woman with Turner syndrome. With proper supportive care, the woman can carry the pregnancy to term and deliver a baby through the normal birth process.
Living With Turner Syndrome
Although people with Turner syndrome may have certain learning difficulties, the majority are able to attend regular school and classes and are generally able to:
•write well
•learn well by hearing
•memorize information as well as others
•develop good language skills
If you have Turner syndrome, you know that it can affect you in several ways. But it's only a small part of your total physical, emotional, and intellectual self.
Here are some suggestions that can help you cope:
•Join a support group for girls with Turner syndrome. Ask your doctor or parents for more information or for help finding a Turner Syndrome Society chapter in your area.
•Stay active in sports or hobbies that you enjoy.
•Consider doing volunteer work. Helping other people can boost your self-esteem and your confidence, too.
•Consider talking to a professional therapist. A qualified counselor or other mental health professional can help you build your self-esteem and address your concerns about living with Turner syndrome. Discuss this with your parents if you think you might need help.
•Keep a journal or diary in which you can record your thoughts and feelings about the challenges you're dealing with.
•Talk to your parents or school counselor if you are having problems at school.
If you have a friend who has Turner syndrome, remember to respect her emotional and physical needs. For example, she may not always feel comfortable talking about her condition, so let her share only what she feels OK with. You can also support your friend just by hanging out and doing things you enjoy together and by being a good listener if she turns to you for advice or comfort.
Reviewed by: Judith Ross, MD
Date reviewed: August 2008
Most girls are born with two X chromosomes, but girls with Turner syndrome are born with only one X chromosome or they are missing part of one X chromosome. The effects of the condition vary widely among girls with Turner syndrome. It all depends on how many of the body's cells are affected by the changes to the X chromosome.
Girls with Turner syndrome are usually short in height. Girls with Turner syndrome who aren't treated for short stature reach an average height of about 4 feet 7 inches (1.4 meters). The good news is that when Turner syndrome is diagnosed while a girl is still growing, she can be treated with growth hormones to help her grow taller.
In addition to growth problems, Turner syndrome prevents the ovaries from developing properly, which affects a girl's sexual development and the ability to have children. Because the ovaries are responsible for making the hormones that control breast growth and menstruation, most girls with Turner syndrome will not go through all of the changes associated with puberty unless they get treatment for the condition. Nearly all girls with Turner syndrome will be infertile, or unable to become pregnant on their own.
Other Effects Turner Syndrome Can Have
A number of other health problems occur more often in girls with Turner syndrome, including kidney problems, high blood pressure, heart problems, overweight, hearing difficulties, diabetes, and thyroid problems. Some girls with the condition may experience learning difficulties, particularly in math. Many have a difficult time with tasks that require skills such as map reading or visual organization.
In addition to short stature and lack of sexual development, some of the other physical features commonly seen in girls with Turner syndrome are:
•a "webbed" neck (extra folds of skin extending from the tops of the shoulders to the sides of the neck)
•a low hairline at the back of the neck
•drooping of the eyelids
•differently shaped ears that are set lower on the sides of the head than usual
•abnormal bone development (especially the bones of the hands and elbows)
•a larger than usual number of moles on the skin
•edema or extra fluid in the hands and feet
Because Turner syndrome can affect how a girl looks and develops, some girls may have problems with body image or self-esteem.
People with TS are all different. Some may have many physical differences and symptoms, whereas others experience only a few medical problems. With early and appropriate medical care and ongoing support, most people with TS can lead normal, healthy, and productive lives.
Diagnosing Turner Syndrome
Girls with Turner syndrome are usually diagnosed either at birth or around the time they might be expected to go through puberty. If a baby girl has some of the signs of Turner syndrome, a doctor will usually order a special blood test called a karyotype. The test counts the number of chromosomes and can identify any that are abnormally shaped or have missing pieces. In some cases, there are no recognizable signs that a girl has the condition until she reaches the age at which she would normally go through puberty.
If the karyotype blood test reveals that a girl has Turner syndrome, her doctor may order additional tests to check for problems with the kidneys, heart, hearing, and other problems that are often associated with Turner syndrome.
Treating Turner Syndrome
Because Turner syndrome is a condition that is caused by a chromosomal abnormality, there's no specific cure. However, scientists have developed a number of treatments that can help correct some of the problems associated with the condition — such as growth problems — and researchers are constantly looking into new forms of treatment.
Growth hormone treatment can improve growth and influence a girl's final adult height. In fact, in many cases, the treatment can help many girls with Turner syndrome reach a final height in the average range, especially if treatment is started early enough in childhood.
Another treatment for Turner syndrome is estrogen replacement, which helps the girl develop the physical changes of puberty, including breast development and menstrual periods. This treatment is often started when a girl reaches about age 12 or 13.
And a technique called in vitro fertilization can make it possible for some women with Turner syndrome to become pregnant. A donor egg can be used to create an embryo, which is then put into the uterus (womb) of the woman with Turner syndrome. With proper supportive care, the woman can carry the pregnancy to term and deliver a baby through the normal birth process.
Living With Turner Syndrome
Although people with Turner syndrome may have certain learning difficulties, the majority are able to attend regular school and classes and are generally able to:
•write well
•learn well by hearing
•memorize information as well as others
•develop good language skills
If you have Turner syndrome, you know that it can affect you in several ways. But it's only a small part of your total physical, emotional, and intellectual self.
Here are some suggestions that can help you cope:
•Join a support group for girls with Turner syndrome. Ask your doctor or parents for more information or for help finding a Turner Syndrome Society chapter in your area.
•Stay active in sports or hobbies that you enjoy.
•Consider doing volunteer work. Helping other people can boost your self-esteem and your confidence, too.
•Consider talking to a professional therapist. A qualified counselor or other mental health professional can help you build your self-esteem and address your concerns about living with Turner syndrome. Discuss this with your parents if you think you might need help.
•Keep a journal or diary in which you can record your thoughts and feelings about the challenges you're dealing with.
•Talk to your parents or school counselor if you are having problems at school.
If you have a friend who has Turner syndrome, remember to respect her emotional and physical needs. For example, she may not always feel comfortable talking about her condition, so let her share only what she feels OK with. You can also support your friend just by hanging out and doing things you enjoy together and by being a good listener if she turns to you for advice or comfort.
Reviewed by: Judith Ross, MD
Date reviewed: August 2008
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