What help is available in Oregon for Male Turner Syndrome?

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My new great grandson (Dec 28 '06)was diagnosed with this birth defect. Most of the info I've found is very outdated and seemingly obsolete. My daughter was told that there are no Dr's in OR who deal with this. Also, what financial help might be available...the baby's mommy is only 15 and cannot get help from the state and her parents' insurance will not cover the baby. HELP!
Please visit http://www.rarediseases.org/ . Tons of information there. I copied some of what I thought might be most helpful to you. Best wishes to you and your family.

If you have a question about a rare disease, available resources, or caring for a loved one, you can call or write to NORD's genetic counselor or registered nurse at any time. Write to Genetic_Counselor
@rarediseases.org or [email protected], or call (800) 999-NORD or (203) 744-0100.

Organizations related to Turner Syndrome:

Birth Defect Research for Children, Inc.
930 Woodcock Rd
Orlando FL 32803
Phone #: 407-895-0802
800 #: --
e-mail: [email protected]
Home page: http://www.birthdefects.org

Human Growth Foundation
997 Glen Cove Avenue
Glen Head NY 11545
Phone #: 516-671-4041
800 #: 800-451-6434
e-mail: [email protected]
Home page: http://www.hgfound.org/

Let Them Hear Foundation
1900 University Ave #101
East Palo Alto CA 94303
Phone #: 650-462-3143
800 #: 877-735-2929
e-mail: [email protected]
Home page: http://www.letthemhear.org

March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains NY 10605
Phone #: 914-428-7100
800 #: 888-663-4637
e-mail: [email protected]
Home page: http://www.marchofdimes.com

NIH/National Institute of Child Health and Human Development
31 Center Dr
Bethesda MD 20892
Phone #: 301-496-5133
800 #: --
e-mail: N/A
Home page: http://www.nih.gov/hichd/

New Horizons Un-Limited, Inc.
811 East Wisconsin Ave
Milwaukee WI 53202
Phone #: 414-299-0124
800 #: N/A
e-mail: [email protected]
Home page: http://www.new-horizons.org

Turner Syndrome Society of the United States
14450 TC Jester
Houston TX 77014
Phone #: 832-249-9988
800 #: 800-365-9944
e-mail: [email protected]
Home page: http://www.turner-syndrome-us.org

Turner Syndrome Support Society (UK)
12 Irving Quandrant
Hardgate, Clydebank None G81 6AZ
Phone #: 44 -013-89-380385
800 #: N/A
e-mail: [email protected]
Home page: http://www.tss.org.uk

Turner's Syndrome Society
21 Blackthorn Avenue
Ontario Intl M6N 3H4
Phone #: 416-781-2086
800 #: 800-465-6744
e-mail: [email protected]
Home page: http://  (+ info)

Can You Have Turner's Syndrome and Not Know It?

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I'm doing a report and I need to know if you can have Turner's and not show symptoms? (like a carrier of the gene defect?) And what is the life expectancy of the people with this syndrome?

Thank you
yes you can have turner syndrome and not know, some females with the condition show very few symptoms that they are missed. usually these females will have Mosaic form of turner syndrome, but some are still classic turner syndrome.
Life expectancy tends to be normal but medical check ups are needed for life, especially heart scans to check for any changes in the heart valves. The main risk for death due to to turner syndrome is actually before these girls are born, almost all conceived turner syndrome girls are lost in early pregnancy  (+ info)

My friend has Turner's Syndrome, will growth hormones help?

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My friend has Turner's Syndrome which means that she will always be very short, and never go through puberty (I feel sorry for her because she has no boobs and she'll never get her period).

She is nearly 17 and for some reason the doctors only figured out that she has this syndrome now.
Is there any chance that growth hormones will help?
And if so, what do they do?
well it depends if her growth plates have fused, if they have not then growth hormone may help her but not a great deal,
What she needs more is female hormones estrogen and progesterone to make her body change, as in boobs, wider hips etc..She can get a "period" but it's caused by giving the said hormones, while she is infertile she still will be given hormones to give her a monthly bleed that will help keep her womb healthy.

My daughter is 12 yr old and has Turner syndrome she started growth hormones aged 4yrs  (+ info)

Is it possible to have Turner Syndrome and still be, like, fertile? (without growth hormones)?

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And not have a webbed neck, small fingernails and deformed elbows?
Women with Turner’s syndrome should be carefully followed throughout life. Growth hormone therapy should be started at age 2–5 years. Hormone replacement therapy for the development of normal female sexual characteristics should be started at age 12–15 years and continued for the long term to prevent coronary artery disease and osteoporosis. Most women with Turner’s syndrome have ovarian dysgenesis; therefore, they are usually infertile, and in very rare cases have spontaneous menses followed by early menopause. Only 2% of the women have natural pregnancies, with high rates of miscarriages, stillbirths and malformed babies. Their pregnancy rate in oocyte donation programmes is 24–47%, but even these pregnancies have a high rate of miscarriage, probably due to uterine factors. A possible future prospect is cryopreservation of ovarian tissue containing immature follicles before the onset of early menopause, but methods of replantation and in-vitro maturation still need to be developed. Should these autologous oocytes indeed be used in the future, affected women would need to undergo genetic counselling before conception, followed by prenatal assessment.  (+ info)

What are the causes/origins of Turner Syndrome?

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  (+ info)

Who is the oldest person that has lived with Turner's Syndrome?

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im doing this for a research and i need references from anyone that answers this question please. thanks a lot
well i know a lady in her 70's with turner syndrome, life expectancy with turner syndrome is not generally affected if health checks are done  (+ info)

Any one ever heard of Turner's Syndrome?

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I'm 16 and I have mosaic Turner's Syndrome, so it's not full blown Turner's. I look normal, exept for the fact I'm short.

I have problems with my ears (deafness in my left ear due to inner ear surgery complications due to Turner's Syndrome) and I have problems with my thyroid (my immune system attacks it, so it's very weak at this point) and I have problems with my reproductive organs ( I most likely can't have kids). I also had to take growth horomones for about a year, I'm now a tall height of 5'3.

I've been told there's an 85% chance I'm sterile, and even if I could conceive I wouldn't be able to keep the pregnancy full term.

If you know somone with Turner's Syndrome or you have it yourself, please tell me. Also even if you know anything about it please reply, I'm just curious.
Turner Syndrome is a female with only one X instead of 2. Since you are mosaic, you have a normal cell line and the monosomy X cell line. You do have a much lower rate of fertility, and a chance for premature ovarian failure. If you have a period, you may be able to conceive. Talk to your OB/GYN when you are ready to have a family, she will be able to help you. If you do become pregnant, make sure the doctor knows of your condition - she will be able to give you the care necessary for a high risk pregnancy.

Go to http://www.turnersyndrome.org  (+ info)

I am trying to become pregnant and have Turner's Syndrome is there any hope?

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My boyfriend and I have been trying for a while and want to know if it can ever happen naturally. Thanks
some women with TS have become pregnant naturally but it's very rare and almost unheard of. Most TS women who want children use IVF with donor eggs or they adopt. IVF tends to have the same success rate in TS women as non TS women........ Contact your specialist there may be tests to see if you do have any eggs in your ovaries, be prepared though chances are the ovaries are shrivelled and have no eggs.........  (+ info)

What age does Turner's Syndrome begin showing?

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Hi Turners syndrome is a genitical disorder...It is a chromosomal disorder affecting females in which all or part of one of the X chromosomes is absent. Occurring in 1 out of every 2500 girls, the syndrome manifests itself in a number of ways.There are characteristic physical abnormalities, such as short stature, lymphoedema, broad chest, low hairline, low-set ears, and webbed neck. Girls with TS typically experience gonadal dysfunction with subsequent amenorrhea and infertility. Concurrent health concerns are also frequently present, including congenital heart disease, hypothyroidism, ophthalmological problems, and otological concerns. [2] Finally, a specific pattern of cognitive deficits is often observed, with particular difficulties in visuospatial, mathematic, and memory areas.

Turner syndrome manifests itself differently in each female affected by the condition, and no two individuals will share the same symptoms.

There is currently no known cause for Turner syndrome, though there are several theories surrounding the subject.
In very first time It was found in a 14-year-old girl with signs of Turner syndrome

Turner syndrome may be diagnosed by amniocentesis during pregnancy. Sometimes, fetuses with Turner syndrome are identified by abnormal ultrasound findings (i.e. heart defect, kidney abnormality, cystic hygroma, ascites). Although the recurrence risk is not increased, genetic counseling is often recommended for families who have had a pregnancy or child with Turner syndrome  (+ info)

How could nondisjunction cause "Turner syndrome?"?

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Nondisjunction
During meiosis in either parent, a nondisjunction event can occur that leaves the gamete, either oocyte or spermatocyte, with neither X nor Y chromosome. When this gamete combines with a gamete from the other parent (with a normal X chromosome), the embryo lacks the normal two chromosomes. Normally, humans have 46 chromosomes, so this leaves the embryo with 45 chromosomes and a single X chromosome, denoted 45,X (or, sometimes 45,XO, where the "O" is used as a placeholder). This is found in 50% of individuals with Turner syndrome  (+ info)

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