Remember The Girls

It's our final #FactFriday this month. While around 70% of males with ALD have adrenal insufficiency, it is reported that only 5% of females do.

Dr. Eichler has been researching and seeing patients with ALD for 25 years. Listen to the latest episode on our podcast to hear a conversation between Dr. Eichler and co-host Taylor Kane as they discuss the history of ALD, new developments, and symptoms in females. https://lnkd.in/gyyK4D5g

Females with ALD experiencing symptoms is not rare. This #FactFriday shows that almost 90% experience symptoms related to the disease by age 60.

Riham is a co-founder of ALD Hope, Canada's first nonprofit organization for ALD. She assists individuals with rare diagnoses in both English and Arabic. Listen to her story as part of our Carrier Connections ALD feature here: https://lnkd.in/eiDvPkyj

The fact that females with ALD can have symptoms is not a new discovery – it has been known for over 40 years! #FactFriday

What is a biomarker? A biomarker naturally occurring molecule, gene, or characteristic by which a particular pathological or physiological process, or disease can be identified. #FactFriday

Thank you, Jana, for joining us for an episode of collectively coeXisting to discuss how you are fighting symptoms of ALD. Listen to her episode here: https://lnkd.in/etk3ZU6Z This month as part of our Carrier Connections series, we are featuring adrenoleukodystrophy (ALD) in partnership with ALD Connect.

Amniocentesis is a family planning optional for women who are carriers/have an X-linked condition. You can learn more about amniocentesis and other family planning options in Remember The Girls' Family Planning Resource: https://lnkd.in/e758mJPr

When Isabella was a preteen, she (along with her mother, Beth) was offered genetic testing to determine if she is a manifesting carrier of myotubular myopathy (MTM). However, the results were held from her for years until Beth's advocacy finally allowed Isabella to receive the results she was waiting for. Listen to our full conversation here: https://lnkd.in/ebQg4VNs

Happy Friday! Our first #FactFriday of the month highlights new terminology put forth by ALD Connect – (a)symptomatic woman with ALD – which includes both asymptomatic and symptomatic females who have an ABCD1 gene mutation causing ALD.