Treatment for Puberty Disruption

There is no cure for congenital hypogonadotropic hypogonadism (CHH) or Kallmann Syndrome (KS), but personalized, age-appropriate treatments can help develop the outward signs of puberty.

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Treatment for females: Low dose estrogen

Low dose estrogen—in the form of patches or pills—is common and can help with:

Muscle Growth
Breast development
Uterine development
Sex drive (libido)
Development of feminine figure
Increased bone density
Combined with progesterone, regular period bleeding (menstruation), but not fertility

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Treatment for males: Testosterone

Testosterone—in the form of injections or a gel that is applied to the skin—is the most common treatment and can help with:

Muscle Growth
Deeperning of the voice
Beard growth
Penis growth
Increased bone density
Sex drive (libido)
Sexual function, but not fertility

To maximize treatment results for CHH/KS, gradual dose adjustment is important and should be determined based on individual age and tolerability of treatment. It is important to maintain treatment over time as instructed by a healthcare provider.

Fertility Treatment (aka, Gonadotropin Therapy)

Infertility caused by CHH/KS is treatable and most people can become fertile with specialized hormone therapy.

Specialized treatment may mean:

Hormone injections several times each week, OR
Wearing a portable GnRH pump
Care from experienced specialists, such as a reproductive endocrinologist
Assisted fertility, such as in vitro fertilization (IVF)

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Overall, 3 out of 4 people (75%) are successful at achieving fertility following treatment for CHH/KS-induced infertility.

Some women achieve fertility with a few months of treatment
Men can take up to 2 years to develop sperm

Importance of Treatment

Although testosterone and estrogen are not vital hormones for survival, treating CHH/KS can help improve overall health, sexual function, and quality of life.

Left untreated, the lack of testosterone and estrogen can cause health problems, such as:

Increased risk for low bone density (osteoporosis)
Osteoporosis means that the bones are weak and there is a higher-than-normal risk for fractures. If CHH/KS is not treated, osteoporosis can affect a person at any age. Some people with CHH/KS need extra treatment for osteoporosis. ‍
In males, a higher risk of metabolic problems such as pre-diabetes or diabetes
Decreased sexual function and desire
Fatigue and depression

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About 1 in 10 people with CHH/KS recover after treatment.

This is called a "reversal" and means they can produce normal hormone levels. The reasons for this are not understood and it is impossible to predict who will have such a reversal. This recovery does not always last, so it is important to be followed closely by a healthcare provider.

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