Laurie Kelley

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

Considering Long-Term Health in Your 20s

Laurie Kelley July 13, 2024

Kevin Correa

By the time teens with hemophilia transition into their 20s, ideally they’ve built a firm foundation on which to manage their disorder. Among many skills, young adults should be able to self-infuse and negotiate health insurance. But when you’re healthy and your hemophilia is under control, it’s easy to overlook general health maintenance beyond hemophilia.

It’s uncommon for 20-somethings to consider the long-term impact of their lifestyle choices. So what if I’ve gained a few pounds? I only smoke when I’m out with friends. I look so much better with a tan. But young adulthood is the time to develop the habits that will help maintain a healthy body in the decades ahead.

I’m Independent. Now What?

Perhaps more than any other time in our lives, the 20s are a decade of major transformation. Many young adults move out of their parents’ home. Others graduate from college. Even those who’ve diligently managed their hemophilia may be thrown for a loop by all the changes in their lives.

Your hemophilia treatment center (HTC) may no longer be in the same town or even the same time zone. And finding an HTC is just one of the myriad issues you’ll need to address: Where will I buy groceries? How long will my commute be? When will I find time to renew my driver’s license?

These changes may take priority, and if you’re feeling healthy, finding a local dentist or doctor doesn’t seem all that pressing. Plus, who has the time?

Not Enough Hours in the Day

Entering the 9-to-5 world for the first time is a big deal that can have a major impact on your health—and not just for those in Deadliest Catch-type occupations. For many, this is their first experience sitting behind a desk for several hours a day. A tangible and common consequence is weight gain. The Centers for Disease Control and Prevention (CDC) reports that an astounding 20% of Americans in their 20s are obese.* Not only is extra weight bad for your joints, but obesity is a contributing factor to several leading causes of death, including heart disease, stroke, and certain types of cancer.

The effects of “a few extra pounds” may not be immediately apparent, but that’s the point. In your 20s, you need to establish good habits to protect your body for the long run. This means adjusting what you’re eating while maintaining some form of routine exercise. Neither is easy to accomplish when you’re just starting life on your own.

“Sean,” a 25-year-old with hemophilia, took a new job recently and is slowly figuring out how to get all the pieces of his life to mesh. In college, Sean competed in triathlons, training 25 hours a week. “In school, you had the motivation of working out with your teammates,” says Sean. “And you had a relatively flexible schedule.” Now he’s struggling to find the hours to train for just a fraction of that time. And like many of his peers, Sean has let his diet suffer: “I know I need to get back to eating food that’s good for me, and not just what’s convenient.”

Living healthy in your 20s doesn’t necessarily require big time commitments. In some cases, you just have to make better choices: When you can, take the stairs instead of the elevator. Cut back on the amount of alcohol and caffeine you consume.

And if you’re among the 1 in every 5 Americans who smoke, quit now. According to the CDC, smoking causes more deaths in the US than alcohol, illegal drugs, and motor vehicle accidents combined.

Sure, you may not have all the time in the world, but your general health should sit atop your list of priorities.

Molehills Can Become Mountains

While you lived at home with your family, you probably had a stable network of medical resources. But once you’re on your own, you may need to rebuild that network by establishing a relationship with your new HTC, plus maintaining all facets of your health.

Dental health is one of the most neglected aspects of overall well-being. By the time you’re in your 20s, Mom or Dad probably don’t schedule your dentist appointments, which means that nobody does…until a minor toothache becomes something worse.

Sean tells a common tale. “I’ve been a bit derelict when it comes to the dentist. What probably wouldn’t have been a big deal had I stayed on top of it, ended with a root canal.”

Your primary care physician (PCP) can be your best ally. You’ll turn to your PCP when you can’t kick that cough you’ve had for three weeks or are worried about anything from a wart on your foot to your sexual health.

As Sean assembles the medical resources he needs near his new home, he sees the value in finding the right PCP. “You want someone you can go talk to about health concerns that aren’t hemophilia related,” he says. “Someone who knows you and your medical history and if necessary, who can point you to the right specialists.”

In addition to addressing your current health concerns, your PCP will review your family history with you, assessing your risk for ailments like heart disease, diabetes, and certain cancers. Armed with this information, together you can develop a plan to reduce some of the risks.

Why Do Today What I Can Put Off ’til Tomorrow?

Throughout your 20s, medical concerns may surface that have nothing to do with hemophilia, and everything to do with the natural aging process. You’ll begin to shed the cloak of invincibility you donned as a teen, and realize that you need to act with an eye to your future.

So manage your total health as attentively as you manage your hemophilia:

• Eat a healthy, balanced diet.

• Maintain your optimal body weight.

• Make exercise a priority.

• If you drink or smoke, reduce your alcohol consumption, and quit smoking!

• Schedule all the exams you’ve neglected for so long.

• If you don’t have a local dentist, eye doctor, or PCP, contact your HTC or insurance company. They can help you find one.

True, for now, you can ignore the incessant commercials for “old people” drugs like Lipitor. But let them serve as a reminder for the not-too-distant future. What’s Lipitor anyhow? It’s a drug that controls cholesterol. What’s cholesterol?

It’s one of many topics you and your doctor should start discussing.

* More recently, according to the CDC, 40% of US adults aged 20–39 were obese between 2017–2018. However, a 2021 Johns Hopkins study found that 56% of Americans aged 18–25 are overweight or obese.

What Kind of Leadership Matters Most When?

Laurie Kelley July 7, 2024

Leadership is an endlessly fascinating topic and one that is never more important now in the United States. The US is facing a critical leadership challenge this year, with a situation it has never encountered before. And it’s interesting when comparing leaders in government to leaders in the hemophilia community. Because this past year, we’ve seen leadership changes in our major bleeding disorder nonprofits. Change often causes constituents—like you and me—to sit up and take notice. Who exactly is running the show? How are they running it—and why?

Certain forms of leadership are likely to be more important when countries, companies or nonprofits are facing unpredictable futures. And an effective and appropriate leadership style is often contingent on the voters, market or constituents you serve.

One study from the 1990s examined this. To identify what qualities of leadership count the most under different conditions, a team of academic researchers asked two top managers of 48 large US companies to assess the qualities of their chief executive and their operating environment.

The top managers assessed the extent to which their CEO displayed the qualities of “transactional” or “charismatic” leadership. The first type of leadership describes an executive who works within the existing system and rewards employee contributions to it; the latter describes an executive who visualizes an altered future and stimulates employee passion for it. The top managers also evaluated the degree to which their firms faced markets that were dynamic, risky, and stressful.

The researchers found that charismatic leadership by the CEO tended to have adverse impact on company financial performance when the market was predictable—but favorable impact when the market and environment was uncertain.

In other words, if a country, company or nonprofit is facing a fast-changing world with an uncertain future, building a passion for the future is critical. And this means getting citizens, employees and constituents on board with a leader’s vision, through trust, communication and credibility.

Ask what’s happening right now in our country, with our nonprofits. Which leader appears transactional? Which charismatic? What vision do they offer? Are they credible? Trustworthy? Communicate their vision well? Facing an uncertain future, a charismatic leader may well command a greater sense of power, of impact. This does not mean they are the best leader, but it means they may be the best at winning consensus and achieving power, conveying a vision and having people believe in them.

Something to really think about this year: whether in US politics or the bleeding disorder community… study the topic and components of leadership as much as you study the leaders.

Source: David A. Waldman, Gabriel G. Ramírez, Robert J. House, and Phanish Puranam. “Does Leadership Matter? CEO Leadership Attributes and Profitability Under Conditions of Perceived Environmental Uncertainty,” Academy of Management Journal, February 2001, pp. 134–143.

Did the Princess have VWD?

Laurie Kelley June 30, 2024

School’s out! When I remember summer days as a child, I recall being outdoors, riding my bike, taking walks in the wood, playing with my siblings… and reading. While we all get assigned summer reading lists for school, I truly enjoyed reading and would devour anything I could.

Most of us hear “fairy tales” as our first stories. Our archivist Richard Atwood of North Carolina, has a “bleeding disorder” point of view on a classic fairy tale—Hans Christian Andersen’s The Princess and the Pea.

He writes a summary: A prince, wishing to marry, searches the world to find a real princess. Unsuccessful in his search, he returns home. During a storm, a princess arrives soaking wet and claims to be a real princess. The prince’s mother, the old queen, devises a test. Servants place a pea from the garden under 20 mattresses and 20 quilts on the bed they make up for the princess to sleep upon. She believes that only a real princess would be sensitive enough to feel a pea buried under so many mattresses.

The next morning, the princess complains that the bed kept her awake and made her black and blue all over! The test proves that she is a real princess. And the prince proposes marriage.

Apparently, Hans Christian Andersen (1805-1875) equates sensitivity with being an alleged real princess. The underlying bruising is ignored. Women with bleeding disorders can relate to the etiology of bruises being misdiagnosed for many years.

Whether fiction, nonfiction or fairy tales, be sure to read this summer!

Source: Hans Christian Andersen, 1984, The Princess and the Pea. Illustrated by Dorothee Duntze. New York, NY: North-South Books. 22 pages.

Achieving Dreams in the Philippines

Laurie Kelley June 23, 2024

Two weeks ago we told the story of a mother in Madagascar with two boys with hemophilia, and the challenges she faces. This week we look at what happens with assistance, when those challenges are met head on with help from the national hemophilia organization with international help. Meet Reinniel and be inspired!

Breaking Barriers, Achieving Dreams

by France S. Alviz June 14, 2024

“My disability doesn’t define me, it refined me.”— Reinniel John Cruz

“He won’t be able to graduate because he has hemophilia. He can’t achieve anything with his condition.” These words can leave a lasting impact. Such phrases can deeply affect individuals, dimming their hopes and aspirations for a brighter future.

Fortunately, Reinniel John Cruz transformed these words into the motivation he needed to excel in his studies. However, this fierce determination and commitment did not come easily to Reinniel.

Living with severe Hemophilia A in the province of Nueva Ecija, Philippines, Reinniel recalled the numerous instances when he felt like giving up on his education due to the challenges posed by his bleeding disorder.

As the fourth child among ten siblings, Reinniel was brought up by his widowed mother alongside his two brothers also affected by hemophilia. However, the challenges increased when his diabetic mother experienced a mild stroke. Seeing his primary carer, whom he relied on heavily, suffering took a toll on him causing him to falter. He also faced another setback when he had to pause his studies during the pandemic, pushing him further into desolation and hopelessness.

When all things seem to have fallen apart, Reinniel reignited his hopes and dreams after a conversation with one of the people he looks up to – Kay Ferrer, HAP’s Vice President, who also has a son with a bleeding disorder.

Asked with a simple question, “Would you like to get back to school and continue your studies?” Reinniel grabbed the opportunity to prove that his ability is stronger than his disability.

Through the years of financial assistance from Save One Life and the scholarship granted by his Kay to cover his tuition fees, Reinniel finally completed his Bachelor’s Degree in Information Technology in June 2024.

In a heartfelt facebook post, he shared graduation pictures along with a message of gratitude to all who stood by him during his journey.

He gave special thanks to his siblings for their hard work to support his dream, to Roy Luis De Guzman, HAP NE’s chapter leader, for aiding him with the necessary medical care, and the rest of their chapter for the guidance and encouragement.

He also expressed deep appreciation for his mentor and companion throughout his hemophilia journey – Jeff Rodriguez, who inspired him and his siblings to strive and conquer challenges despite having a life-long condition like hemophilia. Reinniel extended his immense thanks to HAP President, his Andrea Trinidad, for going above and beyond in empowering him and the rest of the hemophilia community. He valued the guidance and learnings they’ve imparted, enabling him to become self-reliant.

To his fellow hemos, Reinniel leaves them with an encouragement: “Having a disability should not limit us from pursuing our dreams. The suffering we experience now due to hemophilia, let’s use that as motivation to excel in our studies and reach our goals. There are people who have it worse than us. If they can do it, so can we.”

Despite the hurtful words from people who only saw his limitations, Reinniel responded with hope and resilience, leveraging what he has– the support of a community that lifts and empowers one another so they can rise above life’s challenges.

You too can help a person with hemophilia earn a degree and reach their dreams. Click here to DONATE OR SPONSOR a student today.

Room 313 Anita Building Quezon Avenue corner Timog Avenue Diliman, Quezon City 1101 Philippines

Landline: (63) 02- 82984737 Mobile: 0917 640 1371 info@hemophilia.ph