Laurie Kelley

Sending Butterflies to Africa

Laurie Kelley September 1, 2024

I’m writing from Africa! More specifically, from Arusha, Tanzania, the typical launchpad for expeditions up Kilimanjaro. I was also going to hike up it this week, for the fifth time, but things didn’t quite work out for our little team. So instead, we decided to still visit Tanzania and Rwanda. And without all the gear I had to bring, I thought instead I’d bring all the donated materials people have sent for the last four years.

Four years? Yes, because that’s how long it’s been since I have really been traveling for hemophilia. I was in Rwanda four years ago for a workshop in conjunction with the Novo Nordisk Haemophilia Foundation. Together we were trying to help the Rwanda Hemophilia Association, which I helped to found in 2014, create short- and long-term strategies.

Then Covid hit just a month later. And we were house bound for two straight years. Everyone in the hemophilia community knows me as the person to donate unwanted factor and supplies, so these accumulated. First a boxful, then shelves full, then bins, and finally about a quarter of my attic. While I could still ship factor overseas without a problem—its value is enormous relative to its cost by weight—the ancillaries and medical supplies had to wait. It isn’t worth shipping $20 worth of needles at a cost of $100 shipping. So they piled up pretty high!

I collected butterfly needles by the hundreds, syringes, alcohol pads, gauze, tourniquets, and bandages. They were overflowing and I finally had to ask everyone to stop shipping them—I suggested they could donate locally to animal shelters or veterinarian offices.

But with this trip, that changed. There are four of us traveling, and each could take and extra bag. And my boyfriend Doug only needed a carry-on. So that left five big suitcases that we stuffed to the brim with supplies. We even included donated toys and school supplies. And one bag is filled with gear for our guides and porters, as we will be doing a safari. They love getting are slightly used hiking gear and backpacks.

I know everyone who donates enjoys hearing how their donations were put to use. Well, we are dropping off the suitcases at hospitals in Arusha. The hospital staff get the supplies and an almost-new suitcase!

The message? Don’t just throw things away thoughtlessly. I store up zip-lock bags that come with the donations, gift bags, pens, anything that might be of use to someone who lives simply. I take the Styrofoam coolers that we occasionally get and leave them next to local hardware stores with a “Free to a good home!” sign on them. Doug is an avid tennis player and each week he wears out quite a few balls. They look brand new, but are no longer good enough for his games. He used to toss them away! Now he will see what a smile he will get in exchange for tossing them to a child.

Ask yourself: who could benefit from what you no longer need? Consider donating: to Good Will, a homeless shelter, or an animal shelter. In the long run it helps the earth, too.

Thank you—asante sana—to all who have donated and keep donating to us!

Overcoming Depression

Laurie Kelley August 25, 2024

L.A. Aguayo

Overcoming depression and getting out of a rut seems to be major topics in the hemophilia and chronic disorder community. These are topics dear to my heart —I’ve spent years battling myself, my life, my thoughts, and my setbacks.

What helped me overcome depression? The thought if I can overcome it and eventually help other people, then the journey would be worth it. I started this journey ten years ago and the goal was to document how I went through adversity and overcoming depression. What worked? What didn’t work?

Today I want to talk about priming your day for success. I found that having a consistent routine that focuses on positivity, thankfulness, meditating, and envisioning your ideal life can greatly impact the entire day. With continued practice, each day that you win stacks up and creates so much momentum that you start to dig yourself out of the rut. You have to do this while trusting the process and having a long game result in mind. No instant gratification mindset. This is for you. This is for those you love. This is for your reason why. It’s not supposed to be easy or convenient but it’s worth it.

Here are 6 practical tips:

Write down everything you’re grateful for and read them out loud as well. When you write down something, take time to let it sink in. Don’t just skip to the next thing. (For example, if you’re thankful for family, take a few moments to envision and feel what that really is. Paint a picture and memories in your head. Paint the happiest image you can of the future with family.)
Write down who you were in the past and who you aspire to be. What changes need to be made today so that you can get one step closer to being that person.
Have a list of affirmations that you read out loud declaring who you are. Even if you have yet to achieve it, still declare it.
Remind yourself of all the things you have overcome so far in life. Write it down and read it daily.
Understand that happiness is an emotion— not an action or destination. Choose happiness today.
Stop being afraid of your own thoughts. Address them and search for the meaning or the root cause. Then take accountability for your own happiness. Forgive and grow.

And follow my journey as I continue to share advice from the front lines.

L.A. Aguayo has hemophilia, and is a bodybuilder and motivator. He is also author of Adversity =Opportunity: Finding Purpose in the Pain, available on Amazon.

Follow him on Facebook and on other social media platforms.

Black Gods

Laurie Kelley August 4, 2024

Race is back in the headlines: at the Olympics and in politics. How about some positive reflections on race and hemophilia?

Our exceptional archivist, Richard Atwood of North Carolina, has found another book that mentions hemophilia. This one was such a surprise to me, as it takes place in Boston, my home base.

Onaje Woodbine grew up in a Roxbury apartment, a predominantly black neighborhood. Onaje lived with both his parents, who were well educated. Still, Onaje grew up in the “streets,” where the way to escape from a poor environment was to become a gangster, rapper, ball player, artist, or student. Due to his natural talent, Onaje chose street basketball.

Source: https://www.bu.edu/bostonia/winter-spring17/onaje-woodbine-street-basketball/

At 17, he was recruited to a prestigious, private high school in New Jersey. Next, he enrolled at Yale University, playing basketball at an All Ivy League level for two years, before resigning from the team after his sophomore year. His resignation letter was published in 2000, in the Yale Daily News. After completing his Yale degree, Onaje enrolled at the Boston University School of Theology to earn his Ph.D. His dissertation research consisted of four years—from 2010 to 2014—of participant-observation for an ethnographic study of street basketball in the black neighborhoods of Roxbury, Dorchester, and Mattapan in Boston. He wrote daily field notes and conducted in-depth interviews with street basketball players, age 18 to 39. Not all of his professors at Boston University approved of his study on the religious dimensions of basketball.

Many street basketball players used the games as “lived religion” to take their minds to another place and time. The games had the patterned behavior of ritualistic and ceremonial components of religion, partially based on the history of the black church and Muscular Christianity from the YMCA that combined religion, health, and sports. While the streets provided the socializing spaces of community centers, street corners, and basketball courts, in additional to schools and churches, activities such as memorial basketball tournaments during the summer provided means to deal with premature death, violence, fatherlessness, illness, poverty and racism.

From age ten, and for the next seven years, Onaje had a constant companion and mentor named Marvin Barros Jr., who was four years older. Marvin was 6 feet 4 inches tall, skinny, and dark skinned. He also happened to have hemophilia. His swollen, painful, and fragile joints prevented him from playing basketball. He had bleeding gums at night. Instead of playing street basketball, Marvin mentored other young black men and focused on art and poetry. Before he died at age 21 due to complications of hemophilia and HIV, Marvin fathered a son named Daeshawn. The Yawkey Club named its teen center for Marvin Barros Jr. as a memorial.

You read about this fascinating mentorship and author in Black Gods of the Asphalt: Religion, Hip-Hop, and Street Basketball, by Onaje X.O. Woodbine (2016). Woodbine lives and teaches philosophy and religion at Phillips Academy in Andover, Massachusetts—right down the road from me. His LinkedIn account also lists that he is Associate Professor at American University.

Know This Superhero in Hemophilia

Laurie Kelley July 28, 2024

This weekend saw a record breaker. Not the heat. Not the Olympics. Not politics. It was the movie Deadpool and Wolverine, which grossed an astounding $205 million for its opening weekend. I confess I adore Deadpool, followed closely by Wolverine. My two favorite superheroes.

Someone on Facebook recently wondered if the newer generation of people with bleeding disorders will remember the superheroes who once broke records during our time: the late 1980s and early 1990s, fighting for justice and compensation from HIV infection in the blood supply. Our world is safer, thanks to them.

Our favorite researcher and archivist from North Carolina, Richard Atwood, shared with me a review of a book by one of our superheroes. Elaine DePrince, someone I met long ago, inspired me with her advocacy and energy. But her personal sacrifices, generosity and compassion reaches new level after reading about this new book, written by Elaine, called Mikey Speaks Out. You’ll see how Elaine welcomed the challenges of raising children with disabilities, even adopting them. The fighting for justice for them, and authoring two books about her experiences. Just incredible.

Richard writes:

Michael-Noah, called Mikey, was the first child born to a 21-year-old mother whose father had hemophilia. Mikey had not only severe hemophilia A, he also was deaf and had a cleft lip and palate. His mother gave Mikey up. He spent months hospitalized for his surgeries and medical issues. Fortunately, there was a hemophilia center located in the hospital. A foster mother in Buffalo, New York sedated Mikey daily with liquid Valium, which slowed his development. When Mikey was eighteen months old, a psychologist diagnosed him with autism, mental retardation, deafness, and blindness.

Charles and Elaine DePrince, from New Jersey, brought Mikey home with them. Elaine was a special education teacher. Mikey now had two older brothers. Mikey acquired a hearing aid, a padded leather helmet, and glasses, all of which were improvements for his senses and protection. At two, he acquired metal leg braces, that allowed him to walk for the first time. He developed bruises from his hemophilia, and began home treatment, rather than having to visit the hospital, for his factor VIII infusions. When he was three, Mikey attended a handicapped pre-school for half-days. Due to poor motor skills, he had trouble using sign language, yet he could read lips quite well. Audiologists could not determine his hearing loss. At age five, Mikey attended a communication handicapped school for two years. His family adopted two younger boys, named Teddy and Cubby, who also had hemophilia A. In 1986, Mikey, not wearing a seat belt, was in a school bus accident. He suffered a severe skull fracture that resulted in partial paralysis, damaged eyes, lost speech, and diabetes insidious.

In 1988, Mikey, Teddy and Cubby all had HIV tests. At age nine, Mikey, who read body cues of an audiologist, left the deaf school after faking some hearing tests. He began home schooling. During a CT test and an audiogram, Mikey was found to be totally deaf due to missing inner ears. His intelligence was not limited; in fact, he was a speed reader. Eventually, Mikey, Teddy and Cubby became sick with AIDS. The Children’s Hospital AIDS Program was 90 miles away. The monetary award from the school bus accident lawsuit helped to purchase an indoor, in-ground swimming pool and an RV. Mikey learned of prejudice, bigotry and hatred from reactions by misinformed adults. Cubby died of AIDS in 1993. The DePrince family helped to feed the homeless in Philadelphia. Mikey acquired measles, and later toxoplasmosis and cytomegalovirus encephalitis, that led to a seizure, a high fever, and eventually his death. Elaine DePrince, his adoptive mother, wrote Cry Bloody Murder (1997) as the legal theory for HIV transmission in hemophilia. At age 51, Elaine enrolled in law school and took part in the wrongful death lawsuits for her adoptive sons. Following Mikey’s wish, Elaine adopted six girls from Africa!

Elaine and Charles had two biological sons and adopted nine children. Sadly, the three adopted sons died of hemophilia and AIDS. Charles died of Parkinson’s disease in 2020. But nothing slowed Elaine down—her newest book is testament to that. To me, she’s a super mom and superhero. I hope our community remembers her.

Order Mikey Speaks Out here.

Keep Your Lower Extremity Joints Moving!

Laurie Kelley July 21, 2024

Michael Zolotnitsky, PT, DPT

Editor’s note: I’ve been doing a lot of hiking in the mountains lately, and my quads and joints are feeling it! I do basic exercises to keep them in shape. Below, Mike shares what you can do to keep your joints supple and strong.

The pandemic impacted everyone’s life in 2020, making it especially hard to stay healthy. While many of us began exercising from home, some of us have completely stopped exercising because of the increased stress of working from home, managing our children’s school schedules, gyms closing, expensive home exercise equipment, or just being out of routine. This isn’t good for anyone, but if you have a bleeding disorder, lack of exercise can cause major setbacks, including joint stiffening, that put you at greater risk of joint bleeds and more joint damage.

As a physical therapist with severe hemophilia, I’m going to focus on eight imperative workouts to perform daily without any equipment at all. And I’ll explain why these are important to maintain strength and reduce areas of common joint damage!

1. Sit to Stand

Sit in a chair, cross your arms, keep feet shoulder-width apart, toes pointed forward, and stand up. Slowly lower yourself into the chair, repeating 9 more times for a total of 10. If this is challenging, use your arms for support until your legs build strength. If this is easy, find a lower surface.

Purpose: Build strength through the quads and glutes to reduce difficulty with walking and stair negotiation, while reducing pressure on the knee and hip joints.

2. Glute Bridges

Lie on your back, making sure your spine is neutral. Bend both knees, keeping your feet on the floor. With your knees slightly apart, push through your heels to raise the hips up. If this is challenging, use your arms to help push your body up. If this is easy, progress to perform one leg at a time.

Purpose: Build strength through the glutes and the hamstrings. Also great for core activation and balance if performing with one leg. Building up sufficient glute and hamstring strength will also reduce pressure on the knee and hip joints.

3. Standing Hip Abduction

Stand facing a wall, with hands on the wall, knees shoulder-width apart. Start with one leg. Slowly bring it out to the side with toes pointing forward, and then return. Begin with 10–12 repetitions (reps) and progress to 15–20, making sure your body is not rocking sideways. If this is easy, progress to doing the reps without holding onto the wall. While performing this on the right side, the left side is focused on stabilizing, so both hips will feel the workout!

Purpose: Build strength in the gluteus medius, which will keep you upright when walking and improve overall balance to reduce your risk of falling.

4. Standing Hip Extension

Stand facing a wall, with hands on the wall, knees shoulder-width apart. Start with one leg, and slowly extend the leg back, with toes pointing forward. Make sure the lower back is not arching backward or forward; squeeze the glute to engage proper activation. Begin with 10–12 repetitions (reps) and progress to 15–20, making sure your body is not rocking sideways. If this is easy, progress to not holding onto the wall.

Purpose: Build endurance to reduce difficulty in activities requiring prolonged periods, such as hiking or taking long walks. Improving glute strength and performing standing extension-based exercise is important because we are often in the flexed posture throughout the day.

5. Penguins

Stand with your toes pointing forward, and waddle side to side, standing in place. You’ll feel this in the sides of both hips. Begin for 10–20 seconds with feet 1 to 2 inches apart, and progress to 30–60 seconds with feet 3 to 5 inches apart.

Purpose: Build further gluteus medius strength and improve balance. While you balance on the one lower extremity, the other is working. Balance training has been shown to reduce pain in the ankle and knee, and reduce effects of osteoarthritis.

6. Heel Raises

Stand facing a wall, with hands on the wall, toes pointed forward. Slowly raise your body up on tiptoes. Progress to not holding onto the wall, and further progress by standing on toes using both feet going up, and then lowering down on one. Start with 10–15 reps, and progress to 20–30 reps.

Purpose: Build strength through the calves, to improve strength during walking. Ankle bleeds are common, but ankle muscles are not commonly exercised. Having strong ankles will reduce strain that moves up through the knee, hip, and lower back.

7. Hip Flexor Stretch

Kneel on one knee, with the other at a 90-degree angle in front of you. Maintain upright posture, and keep your sternum/chest bone pointing upward. Slowly lean forward and feel the stretch through the groin. Begin by holding 15–20 seconds if you’re under age 65, and holding 30–60 seconds if you’re over 65, to help stretch the collagen. Progress by engaging the glutes to feel an increased stretch through the iliopsoas.

Purpose: Reduce strain on the quad and low back by improving mobility and flexibility of the hip flexor. Since most people are in a flexed posture and seated position for long periods, the iliopsoas tends to get super tight and is an area of increased muscle bleeds. Maintaining good range of motion will reduce the chance of target joints.

8. Hamstring Stretch

In a seated position, have your legs apart, and slowly lean toward one ankle. Begin by holding 15–20 seconds if you’re under age 65, and 30–60 seconds if you’re over 65 to stretch the muscle. Progress by reaching farther to improve the stretch.

Purpose: Reduce strain on the low back and knee joints by improving the mobility and flexibility of the hamstrings. If you spend a lot of time in a flexed posture and seated position, the hamstrings tend to get super tight. Maintaining good range of motion will reduce the chance of developing target joints.

A pandemic can make working out a challenge. These eight simple exercises focus on mobility, balance, and stability, and target all the major muscle groups. They can be performed at home without any equipment. I highly recommend performing these exercises daily, and after six to eight weeks, you’ll see a major improvement. Exercise is vital if you have a bleeding disorder. The time to start is NOW!

Michael Zolotnitsky, PT, DPT, is director of neurological rehabilitation at New Jersey Spine and Wellness in Old Bridge, New Jersey. He also has severe hemophilia A. He can be reached at michael.zolotnisky@spineandwellness.com