“How will you help forge a gender equal world? Celebrate women’s achievement. Raise awareness against bias. Take action for equality.” (IWD.com, 2020)

The 2020 #EachforEqual campaign runs all year long and definitely hasn’t become less empowering since International Women’s Day on Sunday 8th of March.  With all we are currently facing this may seem like a distant memory, however an equal world is an enabled world – especially at times like these. In this week’s blog we feature the stories of three women who are part of the rare disease community.

We are all equal right? The International Women’s Day 2020 #EachforEqual campaign highlights the collective action needed by society. Women are already facing inequality throughout their lives but what happens when this is compounded by a life with a rare genetic condition. Findacure fights for justice within the rare disease community, with a focus on reducing discrimination.  We support some of the most vulnerable groups in society which is especially vital for women who face inequality from their gender, race, health and wealth. Women’s experiences within rare diseases are unique and Findacure have gathered the stories of three incredible ladies – Ola, Sophie & Bhavna, who represent what it means to be a woman in the rare disease space.

Ola Fagbohun has a Desmoid Tumour and is a member of Desmoid United UK, “As a self-employed woman I don’t feel my rare condition has impacted me any differently than the men I know (with the same condition). However, being a self-employed black woman in my field of behavioural insight and behaviour change is a whole other matter; add my rare condition, and I’m rare, upon rare, upon rare.“ Even in 2020, I’m often ‘other’, making it a challenge to really be myself, which sometimes makes life very lonely. “Thank goodness for  the wonderful UK Desmoid community and people I meet at Rare Disease events, my rare disease family.”

Ola has found the Desmoid community a supportive place, where she has found herself also supporting other women. When you have a rare condition, it’s a relief to find others who as Ola explains “sort of” know what you are going through, especially mentally. She explains that although conditions have the same name, they can be found in different locations, meaning everyone has different experiences living with the condition, especially when dealing with medical professionals, friends and family and work.

 

When asked what has been her biggest learning curve, Ola argues “Own your health, learn as much as you can about your condition and how it affects every aspect of your life. I have a file with WHO definition of my condition, research articles, medical letters about treatment I have had and I am having, I take this with me every time I met a new health professional, ‘this means they take me seriously as I usually know more about my condition that they do.”

The belief in the power of effective healthcare and the transformational impact it can have on people’s lives was one of the reasons Sophie founded her company Costello Medical, which provides scientific support to the pharmaceutical industry and wider healthcare sector.

Sophie has felt very lucky to work in a sector and environment where she believes she is treated equally and never discriminated against because of her gender. “I know that not everyone is so lucky and so it is something I try never to take for granted. I feel very fortunate to work in an area that I love and where I believe I can have a positive impact.”

During the first few years of the company she was lucky enough to work closely with several female world experts in her field. Among their peers they were, as women, minorities in largely male dominated forums; their confidence, talent and willingness to ensure their voice was heard was a real inspiration to Sophie “They too took the time to provide me very good advice about the challenges women can face in this sector in general, and specifically when embarking on starting a family.”

 

Sophie highlights what she believes is a common equality factor for many women “I think balancing my commitments to all the things I feel passionate about remains a challenge. I have always loved my work and so balancing my career with life outside, has always been tricky; this of course became more acute when I started a family and I frequently know I am not giving enough time to either my job or my children. I try to constantly improve this and recognise that it is impossible to ever get to the end of my to do list!”

When discussing equality, it is impossible to ignore Sophie’s point regarding the balance between motherhood, career choices and rare disease.

Bhavna’s biggest challenge to date has been realizing that one adversity in life doesn’t make you immune to others “Naively I had thought that you have a given “quota” of problems to deal with. Having my son diagnosed with Stargardt’s has been one of the biggest challenges I have had to face, but it hasn’t been the only challenge. Since then, I have been faced with many other hardships, some questionably harder than his diagnosis and I have just had to keep going. We don’t know what we are going to have to face in our lives and I have learnt to take a moment at a time and not think too far ahead. I can be my biggest critic but I am learning to be kinder to myself.”

Bhavna, like Ola believes that being part of the rare disease community makes her realise that her & her son, Ethan’s story is not as rare as she first thought. They describe a vibrant community where those who have a rare condition are doing what they can to raise awareness and give or be a voice in the rare space. Again Bhavna highlights that many of the issues that are faced by each condition are linked collectively by a common thread that runs through all rare disease patients and their families. It is a community that is supportive, empathetic, reflective and strong. Bhavna lives in the paradox that Ethan’s diagnosis may have been one of the most difficult things for her to deal with, but despite the darkness and despair, it has given life a new meaning, purpose and drive.

“The other day Ethan looked at me and said, “Mummy, how would our lives be without Stargardt’s?” and it got me thinking. I actually couldn’t envisage a life without it. What would life be like without Stargardt’s in our lives?  Perhaps an easier and simpler life- but would it be as fulfilling and as what we have now?”

Community and community support means as mothers women are role-models to their children and their experiences teach us that yes “life can be hard and testing” but it is also exciting and a beautiful gift.  Women’s can-do attitude and resilience is what helps them get through life ups and downs. Bhavna reflects “In the words of the wonderful poet Maya Angelou, “You may not be able to control all the events that happen to you, but you can decide not to be reduced by them”.

People with rare disease are not helpless, especially when they get together and work collectively as campaigners on behalf of millions whose diagnosis is not always clear; they are resourceful because they have to be, a no one else will do it for them.

So put your arms out front and STRIKE THE #EachforEqual POSE: for Women, for Rare Diseases – for Equality!

Women’s Rare Experiences #IWD2020

by Laura Thompson-Harper time to read: 7 min
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