Mental Health

Mothers Focus on Mental Health: Meet BD SUMHAC

May is the month of Mother’s Day, and I want to highlight this week and next two very special mothers and their cause: mental health in those with bleeding disorders.

Those of us who had sons born in the late 1980s found that the community was focused intensely on the devastating impact of HIV. Children and young men who were infected were suffering and dying. When the blood supply was tested and cleaned; when ten thousand were gone; when the lawsuits settled… our community looked to making products safe. When that was accomplished, we looked at joint damage. When that was conquered and prophy became the norm, we had to deal with insurance issues—and still are.

What got overlooked among all the pressing issues? Mental health.

Any chronic disorder must be treated medically. But mental health is important as well.

This year, a mother from the New England area, Kate Bazinsky, announced a new program to address substance abuse in particular. New England has been hard hit with deaths from substance abuse in the general population. Pain and suffering from a chronic disorder like hemophilia, can lead to abuse as well. From Kate’s exciting email:

“The Bleeding Disorders Substance Use and Mental Health Access Coalition (BD SUMHAC) emerged from tragedy. A young man with a bleeding disorder facing a substance use disorder was repeatedly denied access to behavioral health facilities. Without access to the treatment he needed, he overdosed and died. His death shocked the bleeding disorder community, and exposed a critical equity gap in behavioral health access.

“In response, a team of passionate community members, representing both national and local bleeding disorder organizations, took action and BD SUMHAC was born. BD SUMHAC’s mission is to advocate for access to appropriate substance use disorder and mental health treatment facilities for all individuals with bleeding disorders, with a focus on inpatient and residential facilities. We provide resources, tools and advocacy for providers, people with bleeding disorders, and their loved ones.

“Join us in bridging gaps for the bleeding disorders community!

“Since day 1, the commitment and dedication of BD SUMHAC’s team members to breaking down barriers to behavioral health access has propelled the work forward at a remarkable rate. In its first two years, BD SUMHAC made presentations at more than fifty in-person and virtual events to raise awareness both inside and outside the bleeding disorders community. From its first meeting with ten people, BD SUMHAC has grown to over sixty team members from twenty-nine states united in mission and it’s making a difference.

“In addition to the lives that have been changed by this work, BD SUMHAC has made significant progress at the policy level. Visit the website to learn more about the impact we have had as a community!”

What a way to celebrate Mother’s Day by celebrating the achievement of this group in making a difference, for all sons, for all children, for all people with bleeding disorders and substance issues.

Congratulations to Kate and her team and happy Mother’s Day!

You can reach Kate at

Mental Health During [Post] Coronavirus


March is Mental Health Awareness Month. Here’s an article first published in PEN in 2020 that can help when you face stress.

by Debbie de la Riva

The collective pursuit to control the spread of coronavirus has resulted in an enormous challenge for the bleeding disorder community. The economic fallout of sheltering in place has affected our need for a steady income, health insurance, access to medical treatment, and—equally important—our access to each other. The degree of impact on our families is hard to determine, but it’s safe to say this pandemic has been very stressful.

But stress in not a new concept for the bleeding disorder community. In fact, our community has been dealing for years with the emotional angst of fighting for what is needed to manage our medical conditions. Remember our fight for safer products, or our fight for laws to protect us from job discrimination? Today’s battle, for our community, is to deal with the stress resulting from the pandemic. So let’s follow the same steps we have taken so many times before: get informed, find our resources, and stick together.

Get Informed

To learn to manage stress, we need to become familiar with how our central nervous system works. Our brain comes pre-wired with an intricate system that functions to keep the rest of our body alive. This is the limbic system, which provides the “fight-or-flight” response. If the brain determines that the body is in danger, it initiates a chemical chain reaction that gets the body ready to either fight the challenge or run from it. This response begins when sensory information is picked up by a part of the brain called the amygdala. If the amygdala determines there is a threat, it signals other parts of the brain and body to release hormones such as adrenaline and cortisol. These hormones instruct the heart and lungs to increase their output in order to create the energy needed to meet the challenge. This fight-or-flight response is extremely effective when a person needs physical energy to avoid a danger such as jumping out of the way of a car.  But most of today’s challenges are emotional, and they don’t require the extra energy provided by the stress response. The result is a steady supply of stress hormones circulating in the body at all times. The image that comes to mind is a person standing next to an IV pole and steadily receiving drips of adrenaline and cortisol. In others words, our body remains in a constant state of high alert.

The good news: We do have the ability to slow down the stress response. Since we now know that the brain is constantly scanning our body and our environment to determine if it should go into stress or relaxed mode, we can intentionally offer cues to indicate that we’re not in danger. In fact, this is how meditation works. The first goal of meditation is to slow down your breathing rate. This is important, because once your brain receives the signal that your breathing rate is lowered, it will interpret this to mean that you’re not in danger, and will turn off the stress response. The second goal of meditation involves your focus. You want to be focusing on the present—instead of musing about the past or anticipating the future—and you want to intentionally focus on words or images that evoke feelings of peace or happiness.

You can bring up images of when you felt safe and happy, or you can think of words that reassure you. This tool is like anything else in life: it requires practice and commitment. But eventually, you’ll find that you can truly create a sense of well-being, no matter what’s going on in your life. Sound too good to be true? Do you need proof? Ask yourself how you feel when you’re watching a scary movie, and compare that to how you feel when you’re watching a romantic comedy. In other words, what we focus on creates how we feel inside. That same principle is at work when we intentionally think about what we are grateful for, as opposed to what we lack or what we don’t like about our lives.

Find Resources

National Hemophilia Foundation (NHF) and Hemophilia Federation of America (HFA) have created content to help people in the bleeding disorder community deal with both physical and emotional impacts of the pandemic and stress. Visit:

National Hemophilia Foundation

Hemophilia Federation of America

You can also purchase proven self-help workbooks on stress reduction at New Harbinger Publications:

And yes, there is an app for learning to relax! Appropriately called the Calm app, it has hundreds of meditations and master classes on stress management:

You can find these resources and many others by visiting the Mental Health Matters Too website:

Seek Out Others

It didn’t take long for our community to figure out how to be connected virtually. Though it isn’t the same as being in a room together, it is nice to see familiar faces and get a chance to let someone know you are there for them.

Take a moment to check in with yourself, because it’s very easy to feel lonely in isolation. If you find that you’re exceptionally lonely, depressed, or anxious, it always helps to talk to someone trained to help you feel understood and supported. Online platforms like Talk Space and Better Help are reporting an exponential increase in the number of requests for counseling sessions right now.

Look for Purpose

One of the best ways to combat the feeling of helplessness that comes with a crisis is to look for a way you can help others. This sense of purpose gives people some control, and helps them feel productive and useful. For me, contributing to Save One Life is one way I fulfill my need to have purpose in my own life. Each month, I have a small sense of satisfaction knowing that there are three young people with hemophilia who feel that someone else on this planet sees them and cares about them.

So, whether it’s meditating, talking with someone, or just being there for another human, there are ways to combat stress. We will get through this pandemic as a community, the way we always have. We will get informed, find resources, and seek out each other.

Debbie de la Riva, LPC, has been an active member of the bleeding disorder community since the birth of her son with severe hemophilia 25 years ago. She served as executive director of the Lone Star Chapter of NHF, was a co-chair of an NHF Annual Meeting, received a Ryan White Award for Advocacy Excellence, and has presented on mental health issues to chapter and national organizations. In 2018, Debbie founded Mental Health Matters Too as a way of combining her degree as a licensed professional counselor with her passion for helping community members who struggle with mental health challenges. To contact Debbie: or

Originally published in the Parent Empowerment Newsletter (PEN) August 2020

©LA Kelley Communications, Inc. Reprinted with permission.

Boost Mental Well-Being with Empowerment

Sponsored content by Sanofi

May is Mental Health Awareness Month. Since it is not uncommon for people with hemophilia to experience higher rates of mental health issues, this is an important topic for the bleeding disorders community. If you or someone you care for has hemophilia, it can be a time to be mindful of mental health and consider taking empowering steps toward improved well-being.

Studies have shown that nearly four out of 10 adults living with hemophilia met the criteria for depression,¹ and that people with hemophilia and depression are less likely to adhere to a proper treatment regimen.² Withdrawing from friends, family, and the community can also happen over time, all of whom may help with maintaining a well-rounded and connected life.

Mental health not only affects a person emotionally, but also influences physical well-being. “There
is no health without mental health,” said Debbie de la Riva, CEO of Mental Health Matters Too.
“When someone is struggling with a mental health disorder, he/she is less likely to engage in
healthy self-care behavior, such as getting enough exercise. This can have a lasting, negative
impact on their joints and increase the risk of bleeds.”

If you are struggling with your mental health, it is important to talk to someone about it and
possibly seek treatment. Recognizing and acknowledging your condition is critical to managing
mental health. Visit the National Alliance on Mental Illness to learn about the signs and symptoms
of common mental health conditions, such as depression and anxiety, and to better recognize them in
yourself or a loved one. Through honest, open conversation, you can help yourself and others by
breaking down stigmas associated with mental health.

“I encourage people to recognize what mental health conditions look like and how to have that
conversation,” de la Riva says. “It’s time we break the stigma and educate ourselves.”

Another way to potentially improve mental well-being is by taking steps toward a greater sense of

empowerment. Empowerment allows patients and caregivers to have a sense of control over mindsets
and the confidence to make choices and solve challenges that arise. Some steps you can take to help
increase your sense of empowerment include:

  • Embracing uniqueness
    What traits make you special? Think about characteristics like creativity, gratitude, and bravery.
    These are strengths that can help you navigate difficult situations.
  • Engaging in self-advocacy
    Self-advocacy means understanding your needs and speaking up for yourself in order to have those
    needs met.
  • Creating empowering partnerships
    Partners in empowerment support you in your decisions. They can be friends, family, a care team,
    others with hemophilia, and other people in your life who believe in you and your abilities.

Empowerment is an active process that can be nurtured, practiced, and developed over time. One way
to practice empowerment is through visualization. The activity below can be used to help you
visualize the situations, behaviors, and people who give you confidence in navigating life:

  1. On a piece of paper, write a word that describes a situation where you feel in control of your surroundings and empowered to speak about and make decisions regarding your hemophilia. Make that word so large it fills as much of the space as possible.
  2. Fill in the space around your big word with actions you take in that situation that make you
    feel confident.
  3. Write down the names of people who support you, continuing to fill in as much space as you
    can. Post this somewhere you will see it often as a reminder of what makes you feel empowered.
    Sanofi is committed to empowering people with hemophilia. If you’d like to learn more, you can also connect with your local Sanofi Community Relations and Education, or CoRe, Manager, who can provide
    education and share resources for additional information.

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