In conversation with Emelyne Heluin, Vice President of SOPK Europe

Polycystic Ovary Syndrome (PCOS), described by Emelyne Heluin, the Vice President of the French NGO PCOS Europe (known as SOPK Europe), is an "overlooked, misunderstood and minimized" condition.

As we sat down together for an in-depth discussion, patient to patient, I had the privilege to hear about her advocacy journey, the organization's missions, the particular struggles PCOS patients go through, and the crucial role of PCOS awareness and research in creating a better future for the next generations of PCOS patients.

Caroline: Can you introduce yourself and tell us what led you to be involved with PCOS Europe?

Emelyne: I'm 34. My journey with PCOS started when I was diagnosed at 17, but I denied it and chose to keep it to myself for years.

In 2012, I had a big flare-up of the disease and needed to explain it to my friends. This is how I discovered the leading organization for PCOS awareness: PCOS Challenge. Thanks to PCOS Challenge, I realized that most of the symptoms I was experiencing were actually attributed to PCOS.

In 2019, I felt relieved to find a French NGO tackling the subject and I soon realized that the number of women affected by PCOS was much higher than I had initially thought. I had to help and started getting involved immediately as a volunteer. Eventually, I became the Vice President of the association two years ago.

Caroline: Why be an advocate?

Emelyne: For me, feminism and advocating for women's health go hand in hand. I care about people and the societal effects of the disease.

Additionally, I have met advocates from diverse organizations who inspired me along the way. A common thread among them is that once you begin to see improvement and gain a better understanding of your condition, you realize that the journey is a long one. As a result, you begin to ask yourself, "What do I want to make out of it?”.

Caroline: For people who have never heard about PCOS, how do you explain it in simple terms?

Emelyne: It's a chronic and evolving endocrine disease that impacts 1 in 7 women.

Public attention is drawn to the fact that PCOS is the leading cause of infertility in women. However, it is essential to note that PCOS affects women's health long before they consider having children.

As the VP of PCOS Europe, I want to add that it's an overlooked, misunderstood and minimized disease which, very often, negatively impact our social life and chances to succeed in life - whether it be in our relationships, during our studies or at work.

I would end up saying it should be a public health priority because having PCOS can lead to long-term health complications such as a higher rate of cardiovascular disease, higher risks of endometrial cancer and type 2 diabetes. Studies have also shown that women with PCOS are four times more likely to experience a stroke.

Caroline: Can you tell me more about PCOS Europe and its missions?

Emelyne: PCOS Europe was founded in 2018 by Kelly Lescure just after she was diagnosed at the young age of 20.

Starting with a primary focus on bridging the gap in French-language resources by providing free curated and verified information, the organization rapidly expanded, prompting us to diversify our efforts.

To raise awareness about PCOS in France and Europe, we organize meet-ups where patients can share their struggles with the healthcare system and their needs firsthand.

These invaluable connections nurture our work as a patient organization, enabling us to defend their rights and amplify their voices.

Caroline: What are the other initiatives you've put together?

Emelyne: Every September 1st in Paris, we organize the European PCOS Day to start PCOS awareness month. The event includes discussions with healthcare professionals and a march around the Eiffel Tower, where we carry signs to raise awareness about PCOS.

Our efforts also include fundraising for research, facilitating surveys and clinical trials to recruit patients, sharing information about the significance of these trials, and discussing with researchers.

Finally, we ran our own awareness campaign last year called “The Faces of PCOS” but unfortunately, we couldn't do more this year due to budget constraints and limited resources.

Caroline: Can you tell me more about PCOS Europe's difficulties?

Emelyne: Since the beginning, we have been relying on patient donations for funding, but we recently received some punctual private funding. For example, the Brand La Canopée Cosmetics offered a support operation, or Speechi, which is the company I am working for, put together a team so my colleagues and I could run for PCOS awareness.

Our team members work in their spare time for the NGO in addition to their full-time jobs. I hope someday, our actions will be recognized by the French government and secure more funds to further our missions.

Our biggest challenge is obtaining research funding, as the causes of PCOS are complex and not fully understood. I'm often asked, "What are the causes of PCOS?". It's genetic, epigenetic, and environmental, but we don't know its starting point. If we can't provide proof and numbers, some people may doubt the existence of PCOS.

Caroline: Can you talk about the "Letter to My Body" initiative you had a few years ago? I think it would help us to understand why with PCOS, we struggle to talk about our symptoms and live with them.

Emelyne: Letter to my body was an initiative we collaborated on with a French media called Les Eclaireuses for PCOS awareness month. They had a series of videos in the form of letters (letter to my mom, letter to my younger self) and proposed to use that form to talk about PCOS. In our case, it was a letter to my body.

I remember writing it and recording it. It's funny because you think you're in a good place with your symptoms, but then you start recording, and it's still hard to get it out.

Our body provides the first indication of how we cope with the disease. But for the same, we all go through this stage where we have so much anger towards it, for the symptoms we might experience: weight gain, acne, hair loss or excess hair in unusual places... These symptoms are tough to go through.

I think that's why it's so hard to talk about PCOS: it feels shameful.

When individuals with PCOS discuss their hyper androgyny symptoms, people sometimes underestimate its severity since it doesn't cause immediate physical incapacity.

Unfortunately, this sometimes leads to a lack of sensitivity and even mockery that can worsen the emotional burden of the patients, such as depression, self-isolation, and a lack of self-confidence.

It's crucial to recognize that the impact of PCOS on an individual’s well-being extends far beyond what society leads us to believe. For instance, this includes the patient’s mental health, relationships, and career prospects.

We try to live in a society that misunderstands and under-recognizes our symptoms. So we might be prompt to anxiety due to the condition, but the symptoms make us much more anxious. In fact, if we have PCOS, we are seven more times at risk of suicide.

Caroline: How do you see the future of PCOS condition in 10 years?

Emelyne: My vision is that in 10 years, PCOS will be widely known and understood by 100% of the population, and we will make significant progress toward finding a treatment. Research and public awareness must go hand in hand to achieve this goal.

However, we must also be careful about the spread of misleading information and fake cures that can tempt women in desperate situations. This highlights the dissatisfaction among patients with the current care for PCOS, especially in conventional medicine.

The treatment focus has predominantly centered on infertility, disregarding other significant aspects of the condition.

As an organization, we are dedicated to developing long-term solutions for future generations. If the next generation also experiences PCOS, we want to ensure they receive improved treatment and comprehensive healthcare support.

On the other hand, it is important to be realistic and acknowledge that reaching the level of recognition and understanding achieved by endometriosis took more than 10 years. We need time and focus on building a solid foundation, one step at a time.

Caroline: What message do you want to share for PCOS patients and the general public regarding this condition?

Emelyne: Everyone needs to realize that they likely know someone with PCOS. Be mindful of your words around patients and show genuine dedication to understanding this condition because it has become a significant public health matter.

To a recently diagnosed patient, I emphasize the importance of gaining a good education about PCOS. Understanding its mechanisms is vital for living better with the condition. Seek tailored, personalized solutions that address your specific symptoms and needs for sustainable, long-term management. Remember that your experience is unique, and your body is your best ally. Take your time to accept your diagnosis, and keep your head up. It will get better. While PCOS may make us feel like our diagnosis defines us, we are much more than that. I want to remind all patients that you can do anything, even with PCOS. You've got this.

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