FXPOI Resources | NFXF (original) (raw)

FXPOI Resources

FXPOI ResourcesDany Petraska2024-02-26T17:59:31-05:00

FXPOI Resources

Fragile X-associated primary ovarian insufficiency or FXPOI, is a condition in which the ovaries are not functioning at full capacity in an individual with the FMR1 premutation. All women can develop primary ovarian insufficiency (POI), but about 20% of women who carry a Fragile X premutation develop POI compared with only 1% in the general population. Not all women with a Fragile X premutation experience FXPOI. We continue to learn more about FXPOI and identifying risk factors to predict the onset of FXPOI is imperative for women’s health. These resources are intended for individuals who have or may receive a diagnosis of FXPOI.

From Our Info Series
Treatment Recommendations
Webinars
More Resources

Reproductive Health and Your Options

Includes tips for family planning, carrier testing & screening, contraception, growing your family with Fragile X Ssyndrome or Fragile X premutation, and costs

Some women with the Fragile X premutation are initially identified because they have fertility problems and are considering fertility treatment. There are various assisted reproductive options that individuals with the premutation may consider.

You may also be interested in Women’s Health and the Fragile X Premutation, an ebook created to empower premutation carriers of all ages and to serve as a guide for women, their families, and medical providers.

From Our Info Series

FXPOI is a spectrum condition and is diagnosed when indicators of ovarian function are reduced and show an impaired response, although women may still be having menstrual cycles.

Browse our other available Info Series flyers designed to be easily printable on your home or office printer.

Treatment Recommendations

About 20% of women who carry a Fragile X premutation over their reproductive lifespan develop POI, compared with only 1% in the general population. Thus, there is at least a 20-fold increased risk for POI among women with a premutation.

Please browse our other available Fragile X Treatment Recommendations written by esteemed professionals in the Fragile X field and published online for caregivers, parents, families, patients, and other professionals to read and share.

Women’s Health & the Fragile X Premutation

Webinars

More Resources

Fragile X-Associated Primary Ovarian Insufficiency
An introduction to FXPOI, a condition in which the ovaries are not functioning at full capacity in an FMR1 premutation carrier.

Health Concerns for Women Who Carry an FMR1 Premutation — Webinar
Emily Allen discusses some of the health concerns of women who are premutation carriers. She shares Fragile X-associated primary ovarian insufficiency research findings from her group at Emory University as well as from other researchers and covers some of the more recent findings of other medical conditions that are reported by women who carry a premutation, such as depression, anxiety, headaches, and autoimmune conditions.

The Diagnostic Experience of Women with Fragile X-Associated Primary Ovarian Insufficiency (FXPOI)
Watch this presentation from one of our Summer Scholars, Bonnie McKinnon, whose study explored the diagnostic odyssey of women with Fragile X-associated primary ovarian insufficiency. Her team interviewed 24 women with FXPOI to better understand their diagnosis, healthcare experience, and self-advocacy, along with other factors that contribute to their experiences.

Be a part of the solution.

Learn more about the INTERNATIONAL FRAGILE X PREMUTATION REGISTRY and join individuals with the premutation and their families to help advance — and encourage — deeper understanding and research into the premutation condition.

Be a part of the solution.

Learn more about the International Fragile X Premutation Registry and join individuals with the premutation and their families to help advance — and encourage — deeper understanding and research into the premutation condition.