By Shaza Al Muzayen
(Place the following ‘standfirst’ in italics)
This article is published in conjunction with PCOS Awareness Month that is observed during the month of September every year, to show support and solidarity towards those suffering with the syndrome.
KUALA LUMPUR: Loving your illness may seem like strange advice, but for the co-founders of the local polycystic ovary syndrome (PCOS) support organisation My PCOS I Love You (MyPCOS), it is the ethos behind everything they do.
“To properly manage and treat your PCOS, you first need to learn how to live with it. Make it a part of your life.
“Learning to live with PCOS is essentially a process of self-love. That’s how we eventually came up with the name, My PCOS I Love You,” its co-founder Ili Sulaiman told Bernama.
PCOS is a disorder where women experience an imbalance in their metabolic and reproductive hormones. It can cause a host of symptoms including infertility, obesity, hair loss, irregular menstruation and severe or adult acne.
Ili and her two other co-founders, Deena Marzuki and Dr Stephanie Yang, are no strangers to PCOS, having personally struggled with the syndrome for years.
Even before meeting each other, the three women always had the shared dream of setting up a platform to aid Malaysian women struggling with PCOS. Their desire to end the cycle of confusion and silence perpetuated by PCOS also served as a strong motivator for the women as they worked on forming their organisation.
In the end their efforts paid off. MyPCOS was officially launched on Sept 1, 2020, in conjunction with PCOS Awareness Month.
Help is just a click away
MyPCOS’s online platform offers research-based information on the syndrome and its symptoms. Available in English or Bahasa Malaysia, it also advises women on how to get medically diagnosed if they have PCOS.
As the syndrome is not widely-discussed in the public sphere, women with PCOS often find themselves at a loss when first diagnosed. Many are unable to get the support they need as they battle the symptoms, which at times can be crippling.
The MyPCOS team provides these women a number of ways to reach them, including via an online form provided on their website. Through this form, the team can assist women with their PCOS queries and recommend suitable healthcare practitioners.
Those looking to discuss their condition with a support group but in a private setting can join the My PCOS ILY Group on Facebook. Members of the group are encouraged to share their experiences with fellow “cyst-ers” and voice any concerns, questions, or challenges they may be facing.
Their Facebook and Instagram accounts, both named My PCOS I Love You, are filled with information on PCOS, women’s health, and the latest updates from the MyPCOS team.
Additionally, anyone who wants to get in touch with Deena, Ili and Stephanie is welcomed to do so by messaging them on their social media accounts and emails.
The ultimate goal, the women say, is to create safe spaces for women to seek advice, exchange information, and find solace in the understanding and empathy of others who have similar experiences navigating the complexities of PCOS.
Collaborations
The organisation’s local medical partners include gynaecologists, endocrinologists, preventive medicine doctors and mental health counsellors.
“We have some really lovely doctors working with us like Dr Sharan Kaur from Dr Sharan’s Clinic, Dr Keily Wong from MK Prima Clinic and Dr Adzlina Jaffar from the Gleneagles Hospital Kuala Lumpur. Having doctors like them onboard have been great. Their advice has been invaluable, and they bring a wealth of experience to our organisation,” said Deena.
Additionally, they’ve partnered with the PCOS Awareness Association, an American non-profit dedicated to global PCOS advocacy. They are considered the second-largest international PCOS organisation, and MyPCOS is their first and only partner in Malaysia.
Another one of their partners is PlusVibes, a free mobile app that provides mental health assistance and support. The app allows users to chat with qualified listeners, access motivational content and engage in simple relaxation activities. PlusVibes allows users to remain completely anonymous, addressing concerns over privacy and confidentiality.
Rounding up the list is Diet Ideas, Malaysia’s first mobile dietetics and nutrition company which provides virtual consultations and services for home and office visitations.
“Our partners are all set up and run by women, which is a great plus point for us,” shared Deena.
The “Dear PCOS” web series
When the Covid-19 pandemic temporarily shut the world down, MyPCOS decided to help those battling with PCOS feel less isolated by talking about what they were going through.
They filmed and released a web series titled “Dear PCOS”, which focused on the true PCOS stories of 16 women, including that of the three co-founders’.
The “vlog-style” videos covered the women’s experiences such as navigating through different symptoms, the journey to diagnosis and struggles with fertility.
The series was planned in such a way that it allowed for viewers to feel connected to the different stories, helping them gain a better understanding of what it was like to live with the syndrome.
The web series also turned into a family affair for Deena as her mother, Datin Ruzina Idris-Marzuki, 67, was one of the women featured in the videos.
“Growing up, my mother knew nothing about PCOS. She worked hard all her life and didn’t give much time to take care of herself and her health. She only came to be diagnosed much later in life, at age 64.
“She’s now suffering from cardiovascular problems, high blood pressure, high cholesterol, and Type 2 diabetes. These are all related to her PCOS. She wished there were information and support back then because it could’ve helped her in taking better care of herself,” said Deena.
The series can be viewed on MyPCOS’s website and YouTube channel.
My PCOS I Love You and Beyond…
MyPCOS has also established a support initiative called the PCOS Support Association KL and Selangor, which gained NGO status in January 2023.
“We’ll be running different activities under our NGO, but for the first one to two years, we’ll be focusing on building up our credibility.
“We hope that once we have that, there will be opportunities for us to work with the Ministry of Health,” said Ili.
Their enthusiasm to work with the Ministry is also reflected in their desire to incorporate government doctors into their network of healthcare specialists. Currently, their specialists are from the private sector.
The MyPCOS team hopes to find new collaborators that are more fitness-aligned, with their interest mainly directed toward those involved in providing online and community workouts.
The NGO is also keen to run nationwide roadshows, organise health talks with learning institutions, and ramp up their media awareness efforts.
“These are important areas for us to go into. We get to have a greater reach in spreading the message on PCOS to the Malaysian populace and bring attention to the resources we have.
“The roadshows will be particularly beneficial as we’ll have the opportunity to directly address any concerns, confusion, or doubts people have over PCOS. If possible, we’d like to offer free consultations at the same time,” said Stephanie.
Another avenue that the MyPCOS team wants to explore is collaborating with local universities and teaching hospitals to conduct more research on the syndrome. They believe that the body of research on PCOS in Malaysia is currently limited, both in terms of the number of studies undertaken and the sample size utilised.
“We would like to embark on some larger-scale research with them on PCOS prevalence in Malaysia and its impact on our quality of life.
“The updated data from the research would be very beneficial for patients, medical practitioners and the public,” concluded Stephanie. – BERNAMA
