The PCOS Project
PCOS is short for Polycystic Ovary Syndrome. It is the #1 cause of infertility for women in the world. Additionally, the condition causes women to be insulin resistant, which leads to type 2 Diabetes, then to Metabolic Syndrome, which is diabetes, high blood pressure and high cholesterol. To learn more about it, click here.
PCOS is one of the most under-funded and under-advocated women’s medical conditions in the world. There has been very little research done on it, and what little has been done has focused on fertility.
I was diagnosed with PCOS in 2009. At that time, there was very little known about the condition. I was given a prescription for Metformin (a medication that helps regulate blood sugar) and told to go to Weight Watchers to lose weight. Since that time, I have tried Weight Watchers, NutriSystem, low carb, no carb, whole carb and many other diets. None of them has worked and my weight has continued to increase (though I have had some success recently thanks to a medical shakes and bars diet). Additionally, I now have Metabolic Syndrome. To read more of my story, click here.
My experience with this condition has been somewhat atypical in that I was at least treated with respect by my health providers and I do have biological children. Many women with this condition are given Metformin and either birth control or fertility pills, depending on whether or not they are trying to have children and told to lose weight. Many others are given Metformin and told that until they lose weight, no fertility help can be given.
By God’s grace, I was chosen as one of 10 women, out of over 1,000 applicants, to be a part of this project. The stories from these women are heartbreaking. One woman has had 14 miscarriages, one woman’s mother told her that she can’t lose weight because she eats too many pork chops. Almost all of them have stories of how terribly they’ve been treated by the medical establishment because medical providers don’t understand the condition and don’t know what to do for their PCOS patients.
The purpose of the PCOS Project is to research PCOS extensively, to advocate for women suffering from the condition, and to raise awareness of it. The 10 women on the Patient Advisory Board are the beginning. We are being asked to put ourselves, our struggles, our medical histories and our pain out there to support those that are struggling.
The process has already begun. On June 25,2016, we all met at the doctor’s office in Kennesaw to kick off this 15 month long project (15 months is the minimum–I hope to stay with it much longer). The office drew 13 vials of blood from each of us, and collected stool and vaginal samples. There are researchers all over North America, including Canada, that will be testing different aspects of our bodies’ make up. The testing will include:
1. Our entire genome–most of the time when genetic testing is done, only the relevant genes are tested; an example would be that the genetic test for the breast cancer gene only tests for this specific gene.
2. Our proteome, which will show them the levels of 300 proteins in our blood. These proteins show where disease is located in our bodies.
3. Our metabolone, which is a measurement of 100 or more metabolites in our blood. This test will show how our bodies are dealing with our diets and will help diagnose disease.
4. Our microbiome, which will detect the bacteria and micro-organisms that live in our gut and vaginas. This information will provide diagnostic and therapeutic information, particularly for the origin and treatment of immune disorders.
5. Our blood will be analyzed against a database of commonly prescibed medications to determine which will work for us and which won’t, as well as, what dosages are optimal for us.
The concept behind all of this is called Precision Medicine. It’s aim is to treat each patient individually, rather than as a 1 size fits all. In the future, doctors will know whether a medication will work for you before they prescribe it, whereas now, they have to prescribe the one with the greatest chance of success, see whether or not it works for you, and go from there.
All of this information will be used to drive our care. It’s a little daunting to think of having access to all this information. For example, if I have the breast cancer gene, what, if anything, will I do about it? In my case, my mother died from breast cancer, and my grandmother had breast cancer–so a decision (even if it’s to do nothing) will be needed. The genetic information will be shared during a visit with a genetic counselor.
Additionally, all of this information will be uploaded into an Electronic Medical Record (EMR) called myAva. This EMR will be patient driven, rather than provider driven. It will give me access to my information anytime I want it. Also, it will allow me to do whatever I want with my information…no more requesting records from the doctor…it will all be right there at my fingertips. It’s similar to Wellstar’s mychart, but at a whole new level.
We will be given fitness trackers and a scale (ugh!) that will interface with MyAva. We will also be completing daily food and activity diaries. We will go for blood draws every 3 months. The hope is that the researchers can find a common link between all of us that will help them find better ways to treat this condition than metformin. We will also meet monthly as a panel to provide feedback and be a support group for each other.
Additionally, PCOS month is September. We will be at the PCOS Symposium and BOLT 5K in Atlanta (to register or support our team, click here). They want us to form a panel to answer questions. We will also be making a video about what it’s like to have PCOS. We will be sharing what we do via social media. The goal of all this is for us to become the ‘faces’ of PCOS–to raise awareness and let other women know that they are not alone. The plan is for us to go viral.
We have all been asked to participate in the ‘Lemon Face Challenge’ which is similar to the Ice Bucket Challenge. In it, we are asked to suck on a lemon to make our lemon face that represents how much PCOS and the current treatments for it suck. Here’s the link to the group ones we did http://www.pcoschallenge.org/
For the next meeting, we are all meeting with a well known and respected Naturopathic Doctor from Canada. She has PCOS herself and has treated many women with PCOS over the years. She will be giving us a 1 1/2 hour information session on PCOS and nutriton. Then, she will meet with each of us individually to discuss our specific diet and supplement needs. We’re all very excited!
We will also have individual appointments with a fitness trainer to assess our abilities and fitness needs.
I’ve created a group on FaceBook where I will post updates and answer questions. Please click here to join if you are interested. I am not used to putting my personal stuff out there publically like this; however, I will obey my Father and let Him deal with any consequences.
Since I’ve been telling people about my partcipation in this project, so many of them have told me that they or someone they know have PCOS. Please feel free to share this information with anyone you know that is affected by PCOS!