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One Small Step for PCOS – One Giant Leap for Patient Empowerment!

myAva Patient Advisory Board

The Trailblazing Women of the myAva Patient Advisory Board

I’m super excited to introduce you to this incredible group of women!  This is an epic moment in my life and I hope someday yours too!  This photo was taken at our first ever Patient Advisory Meeting held in Atlanta, Georgia and these ladies are true pioneers in healthcare.  Like many of you, these women are survivors and they are brave enough to join me with passion to change the standard of care for women’s health, starting with PCOS.  They have already started rolling up their sleeves to help me create the delivery system for Precision Medicine which will bring women’s health to the forefront of innovation in medicine.

We started the process by sending out a single email to 1000 Atlanta area women diagnosed with PCOS and received such an overwhelming response.  Choosing just 10 women was the hardest thing I’ve had to do so far but here we are with an incredible group of women who have made a commitment to change.  Our motto is No Cysters Left Behind, because not one of us wants to see another woman suffer at the hands of PCOS.

Women have been underserved for far too long in healthcare and as I’ve worked on this project I have discovered exactly why women’s health is in the state it is in!  It has become crystal clear to me why we need more women involved in science, labs, medicine, all the way up to the decision makers.  I am optimistic that we finally have the opportunity to do something!  These incredible women will be advising me every step of the way as I work with the myAva team to build the delivery system that brings Precision Medicine to Women’s Health, starting with PCOS.

I’ll let you in on a little secret, with all the talk you hear in the news about Precision Medicine these days you’d think it was already accessible, but the fact of the matter is that no one knows how to deliver Precision Medicine.  Clinics are not set up for it. The learning curve is steep at every step of the way for every group trying to tackle the issues with disrupting an entire heatlhcare system. People are as afraid of it as they are excited by the prospect of it.  That’s what makes this an optimal time for patients to get involved at the grassroots level – while protocols and systems are being designed. Precision medicine has the potential to level the playing field and women, as a patient group of their own, are done taking a back seat.  One thing I am certain of, 5 years from now a trip to the doctor is not going to look like it does today.

Stay tuned as these women begin their journey and help design a new style of healthcare they will be sharing stories with you along the way. Like with everything new, it might be a bumpy ride but we all think it’ll be worth it in the end!

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2 comments

  1. Paula Means

    This is exciting that you are bringing awareness to PCOS. I am 35 and had PCOS since I was 18. I’ve had to had surgery on my ovaries then because they were the size of a baseball. I was told having kids would be a battle, and it was. By the grace of God I have three healthy children and suffered many miscarriages. I come from a long line of PCOS. Now I have two daughters and one is showing signs of PCOS. I’ve identify them since she was 9 but they said there isn’t much info out there to see if preteens develop it. She is 10 and still hasn’t started a period. She eats very healthy and exercises and is heavy, acne, body hair thickening. My other daughter doesn’t show any signs. We want to help if we can. Please keep us informed with any help you can share.
    God Bless you all.

    Paula

    1. Sonya

      Hi Paula, I know there sure isn’t much out there for girls or even teens when it comes to figuring out what’s going on with their reproductive health! It always seems to be a “wait and see” approach. There are definitely doctors and naturopathic doctors that have some real expertise in this area – you might want to consider finding one in your area that your daughter can see as she continues through puberty. Sign up for updates if you like at http://www.myava.com and you’ll be able to follow the development of the program as well as find out when we’ve got the program launched in your area. Thanks for the beautiful, supportive message! Sonya

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