Living with Premature ovarian failure 1
A condition linked to the fragile X gene that reduces ovary function, causing irregular periods, early menopause and lower fertility.
Understanding Premature ovarian failure 1
It can cause irregular periods, early menopause, trouble having children and high levels of follicle stimulating hormone (FSH). Severity varies. Some women have irregular or absent periods and high FSH before age 40, while others have normal periods but reduced fertility. Low estrogen can cause hot flashes, insomnia and thinning bones. On average, menopause happens about 5 years earlier.
Signs & symptoms
GARD doesn't list a separate symptom list for this condition. It describes these:
- Irregular or absent periods
- Early menopause
- Trouble having children (infertility)
- High FSH levels
- Hot flashes and insomnia
- Thinning of the bones (osteoporosis)
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include genetic specialists, hormone specialists, maternal-fetal medicine specialists and women’s reproductive health specialists.
- 3Consider genetic testing
Changes in FMR1 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
Care & treatment
- Care team
- Genetic specialists (geneticists); Hormone specialists (endocrinologists); Maternal-fetal medicine specialists (pregnancy-related); Women’s reproductive health specialists (obstetricians / gynecologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with rare disease patient organizations for support
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
Changes in the FMR1 gene cause this condition. It is X-linked, meaning the gene is on the X chromosome.
Also known as: fmr1 primary ovarian failure; fmr1-related primary ovarian insufficiency; fragile x associated primary ovarian insufficiency; fragile x premature ovarian failure; fragile x-associated primary ovarian insufficiency; hypergonadotropic ovarian failure, x-linked
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
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