Widening the spotlight

Meet Manuel “Manny” Lopez Serrano, Sanofi CoRe Manager

Manuel “Manny” Lopez Serrano, Community Relations and Education (CoRe) Manager: Published September 2023

Treatment of hemophilia has come a long way since the 1960s. Now that we have achieved so much progress in extending and improving the lives of patients, there’s room to expand the focus on how this disorder affects the family unit and others in a person’s care circle. As a Sanofi CoRe Manager, I’m thankful to be in a position to help foster greater understanding and appreciation for all whose lives are touched by hemophilia in different ways.

Showing Up for the Parents

Emotionally, physically, and logistically, parents face many challenges to meet the needs of their child with hemophilia. In my case, my mom and dad were constant advocates and supporters. From seeking out the best healthcare possible, to requesting school accommodations, they would not stop at “no” or “it’s not possible”. The pursuit for better and greater access to hemophilia care eventually led us to leave our home in Puerto Rico and move to the mainland US.

The relentless demands and dynamics of living with hemophilia often led us to think on our feet and develop strategies to address whatever situation we faced. This in turn meant that my parents had to lean into a very small circle of support as they navigated weekly drives and emergency visits to the hospital, which was over 2 hours away. There were grandparents, friends, aunts, and uncles who babysat my brother, cooked meals for us, and often hosted us as we traveled back and forth. We were grateful to my dad’s boss who left keys and cash in his car so we could access a vehicle in case of an emergency. Many small acts of kindness made a significant impact on my parents’ ability to care for me.

Small acts of kindness can make a big difference to parents of a child with a serious life-threatening condition like hemophilia.

The Value of Sibling Involvement

When one child has a life-threatening condition, addressing their health needs often becomes the center of family life. One may think that shielding unaffected siblings from the harsh realities and daily hardships of hemophilia is protecting them in a positive way. In reality, this creates a situation in which siblings could receive less attention, which might foster feelings of rejection and resentment. We experienced a little bit of this in my family.

A turning point for me and my brother was when we attended a patient event together. This experience profoundly impacted his understanding of what living with hemophilia meant and how it would impact me over the years. This in turn paved the way for healing, which strengthened our bond and relationship.

I’ve come to believe that actively involving siblings early allows them to become the ally, resource, and advocate their sibling needs, while also creating an environment that encourages them to acknowledge and express their own needs. At first, it’s up to parents to foster this kind of open and supportive environment. But there comes a time when you (the person living with hemophilia) need to be the one to express appreciation for your sibling’s support and acknowledge that their needs are no less important.

Recognizing siblings’ needs is critical for their own well-being so they can be the strong support system and advocate that their sibling with hemophilia needs.

Self-Care Helps You Care

Would you believe me if I said asking for help equips you to be able to show up for others? Stay with me on this one.

Hemophilia causes a lot of pain, and in my case much of it stemmed from invisible bleeds that seeped into my joints. This caused acute pain in the short term and joint degeneration (or arthropathy) and chronic pain in the long term.

This pain significantly impacts the way I interact with the world. For example, I often travel for work. When I ask to preboard a plane so that I can settle in and prepare for what may be several hours of pain and discomfort, those around me can’t see the reason I’m asking for special accommodation. I never know what reaction I’ll get. Will the other passengers make inappropriate comments or look at me with annoyance? Will the gate agent or the flight attendant put me on the spot to explain why? I have had all of this happen, and it is uncomfortable.

I give myself the grace to ask for help and forge through these potentially uncomfortable situations so I can continue to show up for others in my personal and professional life. Many individuals before us fought to make the world a more accessible place for people with disabilities and others in need. This is a human right and there is no shame in using accommodations for the sake of your health. Preboarding is just one example of an accommodation you can ask for. Take advantage of an accessible rideshare or hotel room, a scooter, porter service for luggage handling, or any other support services you come across. The key is to acknowledge when you need help and not to be afraid to ask for it.

We sit upon the efforts of many individuals we no longer have with us that have allowed us to live in a more accessible and inclusive world.

Speaking of asking for help, there is an interesting flipside to that. Hemophilia is a part of my daily life, and sometimes I’d like to escape the constant focus on it. While unsolicited help can be very appreciated, it’s just as important for those around me to let me make the call on when it’s time to ask for help.

My final message is this: Let’s take care of the family members and friends who have done so much to support those of us with hemophilia, and let’s give a little grace to those who are still on the path to understanding.

Ask your CoRe Manger about additional information and resources on topics like connecting with an unaffected sibling, parenting unaffected siblings, and advocating for yourself.