ONCE UPON A GENE - EPISODE 142

Half of the Day She's a Diversity Champion, the Other Half a Rare Disease Mom and Caregiver with Yosr Hamza

Yosr Hamza is a lawyer, caregiver, and mom and she joins us to talk about what it's like to be a parent to a child with a rare disease in the Middle East, where rare disease isn't as accepted or normalized. 

EPISODE HIGHLIGHTS

How have you navigated having a child with a rare disease and discovered your powerful voice to embrace your child?

For an entire year, I didn't share my secret that my son had a rare disease outside of my family.  I was my own judge and was scared of anyone judging my capability to work and manage everything. I had to embrace it on my own first before I could grow stronger and move past wanting to hide something that makes me who I am. I now see it from the perspective that if someone can't embrace it, that's on them, not me. I wouldn't be able to embrace my own diversity and be my most authentic self without going through what I have with my child and his journey. 

What tools and resources helped you to move through the initial emotions after your child was born?

One thing I've learned through my journey is to really feel every feeling. I no longer fight back sadness, when I'm down, when I can't do something. It can take a day or two sometimes, but the importance is recognizing when I need to take a break and take time to care for myself. If you're not okay, you can't care for anyone else. I learned that I don't delegate well, but I eventually learned to recognize who was around me, willing to support me and I prepared ideas of things I was able to delegate. It's also been important for me to keep an open mind and not decide in advance what my journey should look like. Being very career oriented, having a plan for myself, it was difficult to realize that I no longer need to win, but I just have to stay in the race. 

As a caregiver, what are your goals for yourself and your child?

I hope to have a space for caregivers and children like my son in my region. It's unfortunate that there are no resources and we have to fight for everything. There are no nurseries or schools and it creates a need for support. The help and resources are not here and the government isn't investing in it. I'm being vocal about this to hopefully inspire other parents to speak out. I hope by sharing my story, I can connect with someone who can help me make a change and create a voice for caregivers. 

LINKS & RESOURCES MENTIONED

Global Genes Patient Advocacy Summit

https://globalgenes.org/event/rare-patient-advocacy-summit/

Mejo

https://www.mymejo.com/

The Caregiver Lawyer on Instagram

https://www.instagram.com/thecaregiverlawyer/channel/?hl=en

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