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Living with Turner Syndrome

Like many rare genetic diseases, Turner syndrome has no cure. As a result, treatments for Turner syndrome revolve around treating the symptoms of the disease and helping afflicted girls learn how to cope with life. If you have a child who suffers from Turner syndrome, keep in mind that these girls have to learn how to live with the disease at an early age to avoid serious self-esteem problems later in life.

Turner Syndrome: Childhood Issues for Parents

Because Turner syndrome isn’t hereditary, few families have more than one member with Turner syndrome. This means that many parents have no idea, at first, how to treat their children with this condition. However, those who understand Turner syndrome can better identify with their child.

Here are the basic differences between girls with Turner syndrome and other girls the same age. Girls with Turner syndrome:

need more frequent trips to the doctor's office for well-child check-ups and for specific medical conditions.
probably have to take growth hormones and endure a schedule of shots because of her short stature. She may have to start taking estrogen as young as six years old.
may have difficulty with motor coordination, visual spatial intelligence and social interaction.
may struggle with math but have an advanced vocabulary for her age.
may look a little different (Along with her short stature, she may have a webbed neck or an unusual hairline).

The most important thing to keep in mind is that, aside from problems learning math and their physical abnormalities, girls with Turner syndrome can still be intelligent and live normal lives. The best way to combat the poor self-esteem associated with their physical abnormalities is to teach girls with Turner syndrome to keep a positive attitude. Your focus should be on modeling the positive attitude that your child should have.

Helpful Suggestions
Here are a few ways those who suffer from Turner syndrome can develop independence, maintain self-esteem and prepare for adulthood:

Get plenty of exercise. You may not make the soccer team, but nothing's stopping you from swimming, shooting hoops in the driveway or walking the dog.
Every week, try to do one new thing without help from an adult. Remind adults that you're learning to do things for yourself.
Get involved in sports teams, dance classes or other community activities that interest you. This is a good way to make friends with people who share your interests. Having friends who understand your condition is a great support system that will keep you positive.
Go on the Internet and read about Turner syndrome. You might even join a Turner syndrome forum and directly talk to others with your condition.
Make a list of all the things you're good at. Ask your teacher to help you. Keep a journal about your successes as a reminder of your talents.
Tell your teacher and classmates what it's like to have Turner syndrome and how it feels to take estrogen or growth hormones. The more they understand your condition the easier it will be for then to accept it.

Turner Syndrome: Adolescent Issue

Although some parents may have worried about their child’s life expectancy when she was first diagnosed with Turner syndrome, women with Turner's live just as long as those without it. However, as your child approaches teen and adulthood, her delayed, problematic puberty and stunted adulthood raise a series of health problems of which these girls (and their parents) have to be aware.

Because girls with Turner syndrome suffer from conditions ranging from hypertension to coronary heart disease to diabetes, it’s essential that these girls eat well, exercise regularly and take any prescribed medications.

Along with preventing and treating the side effects of Turner syndrome, girls with the condition have to treat and work through specific learning disabilities caused by their condition. For example, while a nonverbal learning disability (NLD) may cause difficulties with math for an afflicted girl, she may have special abilities in other areas, such as vocabulary.

Other learning difficulties associated with NLD may make it hard for afflicted girls to read body language, learn visual cues from teachers and adapt to new situations.

What Adolescent Girls and Their Parents Can Do
Girls with Turner syndrome and their parents should work together to promote a positive attitude as she moves through one of the most difficult times of her life, puberty. Some ideas for remaining optimistic and keeping the girl’s self-esteem high are to:

· Be open about your special challenges. Because of NLD, some changes are harder for you. Say, "Hang on a second, Guys. It's going to take me a little longer to get used to this."

Exercise regularly to promote better motor skills, coordination and balance.

If you haven't been tested for learning disabilities, ask your teacher for a referral. Diagnosing these problems can mean that you are eligible for special services, such as a math tutor. Make sure all your teachers know about any concerns you have with regard to nonverbal learning disability.

If you're not developing breasts and getting a period, you may need estrogen. Talk this over with your doctor. Make a list of things that girls of her age can do, and do them with her.

Learn to do the same things your peers are doing. For example, learning to drive will help you feel confident, independent and equal to your peers. Many Turner syndrome patients get blocks to help them reach the pedals.
Make friends with boys through a youth group, camp, dance class or online forums. Spend time with your new friends. Being social will keep you positive.

Make sure that she’s involved in age-appropriate activities, rather than those geared towards younger girls.
Set a reasonable curfew.

Turner Syndrome: Adult Issues

Some of the issues that concern adult women with Turner's include their future as a wife and mother. Often, women with Turner's take estrogen to ensure the development of secondary sexual characteristics (i.e. breasts) and to safeguard against the bone loss that leads to osteoporosis. Because infertility is another common Turner syndrome complication, many women also undergo fertility treatments to help them become pregnant.

As a result, if you are a woman suffering from Turner syndrome, schedule fertility testing and talk to your doctor about whether or not starting hormone replacement therapy is right for you.

Once you become a mother, maintaining your health will be an even higher priority, as your child needs you. Make sure you visit your physician regularly for heart, kidney and thyroid checks, the three organs that are especially susceptible to damage.

Support Systems for Turner Syndrome
While afflicted girls have their parents and teachers for support as they were growing up, women with Turner syndrome should also develop support systems. Recent research has shown that a woman's friends are important to both her mental and physical health.

Besides friends, those with Turner syndrome can turn to other women with Turner syndrome for support and advice on how to live with this condition. While you may not have a support group in your local area, the Internet is a great way to build a network of online pen pals, especially in forums specifically geared towards Turner syndrome. Online friends can share knowledge, commiserate, help you grieve or just boost your morale every day.

Genetic Discrimination and Turner Syndrome

Some women with Turner syndrome find that, while their employers can't fire them just because they have Turner syndrome, they tend to be denied employment, passed over for promotions or be the first to be laid off. This type of subtle action is known as genetic discrimination. If you suspect you have experienced genetic discrimination, consult your support group and go through the proper legal channels to prosecute.

Resources

Developmental Disabilities Resources for Healthcare Providers. (updated 2003) Turner syndrome.

Dr. Gerard Conway Adult Turner Clinic. (updated 2005). TS Healthcare.

Hodson, J. (nd). Turner's syndrome.

Tanguay, P. B. (updated 2005). NLD on the Web!

Turner syndrome Society - United States. (nd). Resources and research: FAQs.

Turner syndrome Society - United States. (nd). Turner syndrome Society of the US National Research Study for Young Girls.

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Posted by rlfraga

August 12, 2008 at 07:52 PM

This is a very good synopsis for someone who has just learned of the syndrome. I am a principal at an elementary school. Today we were introduced to a potential student with Turner syndrome. She is seven and says she cannot read. Her grandmother says she is hyperactive, although she did not exhibit any hyper activity and was well behaved for her age. Our concern is her seeming learning disability in the area of reading. Now this article says she probably will have a NLD in math, too! We want to know how to serve this child academically, should she enroll. ANY thoughts from the academic perspective?

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Posted by Kimberly

August 14, 2008 at 07:21 PM

I'm an elementary teacher and was suspected of having this and tested in 1981 at 18 years old and 96 pounds 5'3". My problem is in the chromosomes but not that. However, I had a very difficult time in my teens with not developing etc. I started menstuation after hormone replacement when I was 20 and I grew 3 inches. Anyhow, my sister in law has this. She graduated from UCF and is a Supervisor at Disney World. Yes, she has all it says, short stature, had cancer, crohns. She drives and manages like anyone. No kids. My brother has always adored her and they have been together 10+ years. She is very smart and capable. She had trials when she was younger with parents divorcing, etc, hard financial life. But she is extremely positive and cheery. She looks like a doll with make-up on, she's so cute. Now she's in her 30's. No one ever babied me or her, or showed any special accomodations. Both of us are successes. By the way, the memory thing and math is true. Estrogen (Premarin and Provera) Lexapro, and Boniva DOES help. I've always had Oesteoporosis, broken all kinds of bones, and have 2 year Dexa scans. I am smarter and remember things so much better now after all the estrogen and the Lexapro for the extreme anxiety (however, I always did everything anyway, only afraid). In high School, I took Chemistry got a C and one Algebra course D. Those two courses were the minimum math required to graduate HS. I finished college at 32. In school and college I was in Honor's and I tested especially Gifted in Science and Reading (I learned to read and was crazy for reading). I was in the Honor's program at college in a special program. But math was terrible. I had to take all the college math and remedial math self-paced. It took a whole year of focusing on just 5 math courses full time, tutoring, when I was 29 years old. and I am 45 now and just got my Broker's license (after my Sales Associate's). There are numerous math problems, pre and post licensing classes, and state exams for both Licenses. I also took the incredibly hard Amateur radio test. I love math now. Hope this helps.

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