Laurie Kelley

History and Politics… and Hemophilia

Laurie Kelley January 19, 2025

Hemophilia is a rare disorder, but it has one of the most notorious histories in the world, as far as disorders and diseases go. What is comparable? The thalidomide disaster of the late 1950s and early 1960s. The drug thalidomide was given to pregnant mothers to ease their morning sickness, and ended up causing horrific birth defects. It was banned in 1961. It was the medical establishment endorsed by the political establishment… sound familiar? Even more eerie, about 10,000 babies were affected worldwide. The same number as affected by the HIV scandal of the 1970s and 1980s in the US. (Watch a good documentary about this here)

A close second could arguably be the recent pandemic. Only this time the political establishment interfered with the medical establishment in putting guardrails in place. The World Health Organization estimates about three million died of Covid.

I was thinking of how the first two tragedies spurred their respective communities to action politically. Our hemophilia community led the charge, and forced political changes that made blood donations and our nation’s blood supply safer. As we approach a new political era, we need to remember and study history, and monitor political winds of change. They could be drastic.

I was thinking of all this yes, due to the upcoming change in presidents, but also as I was listening to music videos on YouTube. While seeking out new music to put on my iPod (I still use one) I came across this one—“Gone Too Soon.” I’m not a huge Michael Jackson fan—although I loved MJ The Musical—but never even knew that he made a song and video for Ryan White. Think of Ryan as our ambassador of Hemophilia and HIV. He was the face and name that represented thousands. A brave young man and a stoic and determined mother.

I feel badly that I didn’t know about this video and song. I’ve watched the movies and read a lot about this era. But I wonder, with all the new moms and dads joining the Facebook groups recently, do they know who Ryan White is? What the Hemophilia Holocaust is?

If they don’t, we need to remind them. Like our current politics, we need to be involved. And that means knowing our past, so we can determine our future.

Netflix offers The Ryan White Story—a must see for parents of and patients with hemophilia.

Be a Goalie!

Laurie Kelley January 12, 2025

It’s pretty typical that we think of the new year as a time to set new goals for the coming months. It’s not a bad idea! We seem to think of January as the beginning of new plans, new opportunities, a new start. By March, some of those plans fizzle out. By July, we give up and wait for next year. Ever happen to you?

What makes us give up? What makes some people stick with their goals and succeed?

Goals are concrete targets, measurable and incremental. They build a visible step-by-step path to success. But you can’t build that path until you have a vision of what you want to achieve. Think hard first about what it is you want to achieve. For most people, it seems that a healthier lifestyle is tops for goal-setting. Let’s use that as an example. Rather than set a goal as “I want to get fit,” instead, say “I want to walk 10,000 steps daily.” And you can easily visualize yourself getting up each morning early, and walking two miles, which will give you almost half that goal already.

Once you’ve decided on a goal, set an objective. Goals are composed of objectives, which are manageable, sequenced, and measurable tasks. Objectives spell out what must be done, in what order and by what date, to reach a particular goal. Objectives for our walking goal? Buy appropriate footwear. Be cleared by a physician. Decide on a route.

Make sure your goal is written somewhere where people can see it. This will hold you accountable. Post in your house or on social media. Ask friends to join in.

Even writing goals and objectives isn’t enough. Goals must be worded in a way that makes them effective. Effective goals are exciting because they create energy and momentum, and are achievable. They compel us to act now. So your goal might be “Walk 10,000 steps a day while listening to audiobooks,” a way to achieve two goals at once!

Finally, be sure to reward yourself for milestones. Yes, you’ve walked 10,000 steps every day the first week. That’s 70,000 steps! Give yourself some reward for achieving a milestone, like 100,000 steps. But not something that will defeat the ultimate goal of getting healthier. No alcohol or chocolate! Trying buying a new book… perhaps on goal setting!

Happy New Year!

Laurie Kelley January 5, 2025

Kuvarsing Pawara: New Leg, New Life!

Laurie Kelley December 29, 2024

We often count our blessings at the holiday time of year. Sometimes it takes a reminder to know how fortunate we are to live in the US, even during troubled times.

I traveled in India for one week this month, primarily to visit the Christian Medical College (CMC) Vellore, where they specialize in caring for people with hemophilia. World renowned, we trust them and offer our support for surgeries for the poor. To date we have provided surgery or prosthetics for about a dozen patients. One of these is Kuvarsing.

I learned from our wonderful colleague and friend Usha Parthasarathy that this 25-year-old with hemophilia B has an inhibitor, making his life in poverty doubly difficult. He lives in Ramapur village, Maharashtra. His family works “in the field,” and he has two brothers and a sister.

He was undiagnosed for years. One day he developed swollen knees and severe pain in one knee. Despite the pain, Kuvar took his school exams. The control the boys have over pain is astounding. After the exam, he attended a health camp where he was informed that blood had accumulated in his knee and surgery was required. He underwent surgery and doctors applied bandages to his knee for three months. After the bandages were removed, swelling persisted. Further complications led him to the health camp for another surgery, during which more bleeding occurred.

Doctors referred him to King Edward Medical (KEM) Hospital in Mumbai, where it was diagnosed that Kuvar suffers from hemophilia B. From 2019 to 2020, despite health setbacks, Kuvar enrolled in a Bachelor of Arts program and successfully completed the first and second semesters!

Unfortunately a pseudotumor—almost unheard of in the US—developed in his knee. He tested positive for an inhibitor. The medical team at KEM hospital did their best to save his limb, but the high infection rate of the pseudotumor eventually led to amputation. The national group Hemophilia Federation (India) provided factor. The medical team at KEM wanted to provide him with a prosthetic leg for which he needed monetary support. But Kuvar would need to pay for this himself. Due to Kuvar’s low economic background, the financial burden has placed him in a difficult situation.

When we heard about this, we acted. Kuvar now has a new leg… and a new life. A great way to start 2025!

Merry and Bright: How to Stress Less and Have a Healthy Holiday Season

Laurie Kelley December 22, 2024

By Catherine Canade

Coalition for Hemophilia B Health and Wellness Coach

‘Tis the season for family, fun, and stress. This year, give yourself the gift of wellness by using strategies to reduce stress, strengthen family connections, and truly enjoy the holidays. As the holidays approach, it’s easy to feel overwhelmed, so it’s important to embrace these wellness tips for a stress-free season.

Parents Giving Children Piggyback Ride On Walk In Woods

(1) Practice Open Communication: Be Intentional

Find the time to talk as a family about the holiday stressors and how you want to address them when they come up. Unrealistic expectations can lead to disappointment. Set realistic goals and expectations to help minimize stress. Practice gratitude and contribute to your community.

(2) Make Time For Time Management: Quiet Your Calendar

Create a holiday schedule that allows for balance between work, family, and relaxation. Introducing time management to a hectic schedule can help reduce the feeling of being overwhelmed. The holiday season rarely goes as planned, so have a flexible mindset’ No matter what the celebration looks like, connect it to the bigger reason for the season. Make time for what you love that brings you joy and happiness.

(3) Establish Boundaries: Unplug From Work

Set healthy boundaries by limiting the time you spend with extended family, friends, and holiday gatherings. Creating a budget for financial stress is common during the holidays. Focus on the meaning and values of this time of year rather than just the material aspects. This can help shift the emphasis away from consumerism and reduce stress.

(4) Resolve Conflict: Share Responsibilities

Conflict often arises when you’re Hungry, Angry, Lonely, or Tired. Use the HALT acronym to check in with yourself, Addressing these needs helps you manage holiday stress more effectively. Healthy coping strategies include deep breathing, mindfulness.journaling, exercise, music, and connecting with others.

(5) Maintain Traditions: Prioritize Your Own Peace

Establish and uphold meaningful rituals and traditions to bring a sense of continuity and comfort during the holidays. Perfectionism can lead to unnecessary stress. Normalizing imperfection reminds you that no holiday season is perfect, and it’s okay to have some spontaneity and unexpected surprises. Honor those who aren’t here by cherishing the fond memories you’ve made together.

(6) Respond With Kindness

While you can’t control how others act during the holidays, you can choose your own response. Be kind to yourself-practice self-care and self-love. It’s okay to take a break or say no to social events. Focus on what truly matters to you this season. Remember the “ME” in MERRY’

The Coalition for Hemophilia B. Reprinted with permission. Subscribe to their newsletter at https://www.hemob.org/