This story was shared through NEHA’s Mental Health Community Stories project to remove the stigma, raise awareness, and increase conversation around mental health. Manny shared his story on camera and in written format. Watch Manny’s video here.
My name is Manuel, but I go by “Manny.” I am native to Utuado, a beautiful town in one of the mountainous regions of Puerto Rico.
When I was little, my parents noticed I had bruises and large lumps which came from hitting myself while learning how to crawl and walk. They took me to a local pediatrician, who determined that he suspected that I had some form/type of hemophilia. He referred me to the pediatric hematology and oncology clinic at Centro Médico de Puerto Rico, where I received an official diagnosis of severe hemophilia B at nine months old.
Much of my childhood was spent in the pediatric ER battling major bleeds and as a result, I grew up very insecure and scared to do anything or experience new things. At that time, home infusions were not an option for me, and after a lot of advocacy work, my parents were able to convince the HTC in Puerto Rico to allow me to start on-demand home infusions a little earlier than expected. This was a major victory as it nearly eliminated my need to go to the pediatric ER.
In 1998, after Hurricane Georges struck Puerto Rico, my family lost nearly everything we owned: including all of the factor in the fridge, due to our home flooding. Months after the hurricane, my parents decided to move to the mainland of the United States to seek better opportunities for our family and better treatment options for me. Once we got here, I went to the Hemophilia Treatment Center of Western Pennsylvania. I was put on a factor IX recombinant prophylaxis treatment regimen by Dr. Margaret Ragni. I credit prophylaxis as being a life saver and a game changer for me as it allowed me to live a more “normal” life.
As an adult, I’ve learned to live with or overcome a lot of the fears and traumatic experiences that I experienced as a child. It has taken a lot of work but I now recognize the power of understanding one’s own mental health journey. Continuously working through the tough moments, the exhausting cycles of depression, anxiety, and sadness is hard, but it it’s necessary.
It was not until the past few years that I have been able to look myself in the mirror and say, “I also struggle with my mental health and it’s ok, but I need to find solutions”. I still have cycles of depression, anxiety, sadness – all are directly attributable to hemophilia and the degenerative effects it has had on my body.
I have found ways to cope with those moments. When I start to notice symptoms, or notice that I feel like I’m falling into one of those ruts, I try to do the things that bring me joy, like biking, hiking, canoeing and enjoying the outdoors, especially now that I live in New Hampshire. I love spending time with my family, my community and playing video games.
Doing the things I love is only one way to cope. I also have tremendous love and support from my wife, Emily, my parents, my brother, and my friends. That is just as important as “doing things.” My faith in God have been with me every step of the way. Without God I would simply not be here and would not have been able to survive hemophilia. If you feel like you are struggling with your mental health, try to find ways to cope and if that doesn’t work, don’t be afraid to seek help with a healthcare professional as quickly as possible. I hope that by sharing my story, I can play a role in reducing the stigmas associated with mental health and seeking help. We are all human, and we all need someone. So, please, I urge you look and ask for help, you are not alone, we are with you.