Laurie Kelley

It’s Summer Camp Season!

Laurie Kelley July 5, 2026

It’s summer camp season, especially for kids with a bleeding disorder! Attending summer camp is an excellent way for your child to engage in physical activities that appeal to him in a supervised setting designed for children with bleeding disorders.

At camp, your child will develop physical skill and build his self-esteem. Summer camp offers something that’s hard for parents to provide at home: a chance to fly away from under your protective wing. For no matter how you try to grant your child freedom, your shadow is everywhere in his young life, and your relationship with him is probably intense. Being on their own, without parents to please or look up to, is a step toward
maturity that most kids welcome.

It’s normal for parents to be nervous about sending their child away for a week. It may also be intimidating for your child at first. Feeling separation anxiety is normal for any child, especially if he has depended on you for infusions. If your child is socially immature or very dependent, camp can help
him mature.

How do you know if your child is ready for camp? Watch how he handles sleepovers. Is he homesick after only a few hours? Is he comfortable staying all night? Has he stayed with friends and neighbors as well as close relatives? If he handles sleepovers comfortably, he might be ready to try a bigger adventure.

Selecting a Camp
All hemophilia summer camps are not created equal. They have similarities and differences. Here’s how they are alike:

At a minimum, each camp is staffed with a nurse (usually an HTC nurse). Most have a social worker, physical therapist, and doctor on staff. Some have several nurses and doctors on staff with a fully outfitted medical clinic.
There are daily medical checks and infusions for injuries.
Most camps teach self-infusion—perhaps a good reason to send your child to camp.

Here’s how they differ:

Some camps are mixed, enrolling children with bleeding disorders and children with other blood disorders or disabilities.
Some are only for children with bleeding disorders.
Some are for both boys and girls.
Some allow families to stay, and some allow only siblings.
Most are for specific age groups.
Some provide extensive training for counselors, while others rely on untrained volunteers.
Each camp has its own philosophy. They all offer different activities.

Consider the following list before deciding on a camp for your child. If one camp doesn’t meet your expectations, use these questions to find a camp that does:

How long does camp last?
Is camp only for children with bleeding disorders?
Are there any costs?
How is infusion taught?
Which age groups will attend?
Are families allowed to attend? Siblings?
What training do counselors receive? Do they have bleeding disorders?
Are there special events, like overnight camping, river rafting, or talent shows?
How is discipline handled? What rules are children expected to follow?
How is homesickness handled? Can my child call home, or is this discouraged?
What is the camp philosophy? Is there a religious, ethnic, or regional theme?
What is the ratio of counselor to campers? Suggested ratios are 1:6
(one counselor to six campers) for ages 6 to 8; 1:8 for ages 9 to 14; 1:10
for ages 15 to 17.
Who are the counselors? What is their training?
Who are the medical staff? Can I meet them personally?
What menu is offered? Can the camp accommodate special dietary needs?
Which activities are offered?
What are the protocols for medical emergencies?

Typical camp activities include archery, swimming, boating, canoeing, volleyball, board games, ping-pong, tennis, tower climbs, hikes, nature walks, woodworking, crafts, and scavenger hunts. Some camps o er rappelling, ropes courses, whitewater rafting, and horseback riding. If your child is interested in a particular activity, find out if the camp offers it. If possible, visit the camp to get a feel for where your child
will stay.

Camp is a big step: exciting, fun, and can make enormous positive changes in your child’s life!

Living with Hemophilia in Pakistan: My Story of Struggle, Pain, and Hope

Laurie Kelley June 21, 2026

My name is Mazhar, and I was born in Pakistan with hemophilia. My life has never been easy. From childhood, I had to live very differently from other children. While they could run, jump, and play without fear, I always had to be careful. Even a small injury could lead to serious bleeding and long painful recovery.

Growing up in Pakistan made life even more difficult. Treatment for hemophilia is not always easily available. Factor medication is often very expensive or not accessible on time. Because of this, many times my treatment was delayed, and my pain became worse than it should have been.

I used to suffer from bleeding in my joints, especially in my knees and ankles. The pain was so severe that walking became extremely difficult. Swelling, stiffness, and burning pain were part of my daily reality during these episodes. In those moments, I completely depended on my family. They always stood by me, but limited resources made everything harder for all of us.

Financial problems became a constant struggle in our life. Every hospital visit, every medicine, and every emergency created stress. Many times, treatment was delayed simply because money was not available at that moment. Those situations were mentally and emotionally very painful for our family.

School life was also not easy for me. I missed many days due to pain and hospital visits. While other children enjoyed sports and physical activities, I often stayed on the side, watching them. This made me feel different and sometimes isolated, even though I wanted to be like everyone else.

Emotionally, hemophilia affected me deeply. There were many nights when I used to think about my future. I often asked myself whether I would be able to live a normal life, work properly, or take care of my responsibilities. These thoughts were heavy and difficult to carry.

In the middle of all these struggles, some people brought light into my life.

Laurie Kelley is one of those special people. She has been a great source of support and strength for me and my family. Her kindness, care, and continuous help came at times when we felt completely helpless. She did not just provide support; she gave us hope. When everything felt dark, she reminded us that we are not alone. Her compassion gave us strength to keep going, and we will always remain deeply grateful to her.

My brother, Awais Shabbir, is also a hemophilia patient. We have walked this journey together. He is not just my brother but my closest companion in pain and strength. We understand each other without words. When one of us feels weak, the other tries to stay strong. Having him beside me has made this difficult journey more bearable.

Today, I still live with hemophilia, but I also live with hope. Life has taught me patience, strength, and gratitude. Hemophilia is a part of my life, but it does not define my entire identity. I am more than my condition, and I continue to move forward with courage.

I hope that one day, better treatment, awareness, and support will be available for every patient in Pakistan. No child should have to suffer simply because treatment is out of reach.

If my story helps even one person feel less alone, then sharing is worth it.

LA Kelley Communications’ Maximum Impact program has provided Mazhar with funding to purchase an electric bike, to enable him to go to work more easily, and funding for a down payment on a home, to move out of the one room he and his family shares, to a larger dwelling.

A new home for Mazhar and family

Living with Hemophilia in the Philippines: Psychosocial Issues

Laurie Kelley June 7, 2026

Hemophilia is a bleeding disorder that many people in the Philippines still rarely hear about. When people think about hemophilia, they usually imagine bleeding, bruises, needles, and hospital visits. But honestly, the hardest part is not always physical pain. Sometimes it is the feeling of being misunderstood, left out, or treated differently your whole life.

For many boys growing up with hemophilia, there is always that question in their mind: “Why am I different?” While other kids freely run, climb, or play basketball outside, they are constantly reminded to be careful. Some grow up feeling limited before they even fully understand what is happening to them.

School can also become difficult emotionally. Instead of feeling accepted, some children with hemophilia experience teasing, bullying, or judgment from classmates. They get called “weak” because they cannot join rough games or sports. There are times when they simply sit and watch other children play while they stay on the side trying not to get hurt. That kind of feeling stays with a child.

Even teachers sometimes become too protective. Of course, they only want the child to stay safe, but constantly being excluded from activities can slowly affect confidence and self-esteem. Imagine growing up always hearing “you cannot do this” or “be careful” every single day. After a while, some children begin believing they are less capable than everyone else.

As they grow older, the emotional struggles become heavier. Some teenagers avoid making friends because they are tired of explaining their situation. Others become quiet and isolated because they feel nobody truly understands them. There are days when they act strong outside, but deep inside they are already emotionally exhausted.

Mental health is something rarely talked about in the hemophilia community. Many silently deal with anxiety, overthinking, fear, and sadness. Hospital visits become a normal part of life. So does the fear of sudden bleeding. Some patients even feel guilty, thinking they are becoming a burden to their family because treatment and care can be expensive.

And in the Philippines, that reality hits hard. Not every family lives near hospitals or treatment centers. Some travel for hours just to get medical care. Parents miss work, spend sleepless nights worrying, and carry stress that they rarely talk about. Mothers sometimes quietly blame themselves because hemophilia is inherited, while fathers pressure themselves to find ways to provide for treatment and daily needs.

Even siblings are affected too. Some learn to understand early why more attention is given to their brother with hemophilia. It changes the whole family dynamic in ways people outside the home rarely notice.

Then there is society itself. Many Filipinos still do not fully understand hemophilia. Some people think bruises are signs of abuse. Others immediately assume a person with hemophilia is weak or incapable. Those misunderstandings can be painful, especially for someone already struggling emotionally.

Finding work can also become stressful. Some adults with hemophilia hide their condition because they fear rejection or discrimination. Others constantly feel the need to prove themselves just to be treated equally.

But despite everything, people with hemophilia continue moving forward. They study, work, help their families, build friendships, and continue chasing dreams. Some may carry scars, pain, or trauma, but they also carry strength that many people never see.

This is why awareness matters. People with hemophilia do not only need medicine. They also need understanding, support, acceptance, and equal opportunities. Sometimes, a little compassion already makes a huge difference. Because the real battle of hemophilia is not only about stopping the bleeding. It is also about surviving the emotional, emotional, social, and psychological struggles that often stay invisible to everyone else.

Jeffrey Castro Rodriguez is 44, has hemophilia A and lives in the Philippines. He graduated with a degree in psychology from Adamson University and worked as a call center agent after graduating in 2010. Growing up in a developing country where factor was never available, from a poor family with no stable source of income, his childhood was filled with hospital visits, financial struggles, and painful memories. He lost four brothers to severe bleeding during the 1990s. He himself is also a stroke survivor. Jeff now works from home as a Virtual Assistant while continuing his mission of serving the hemophilia community. He is vice-president of Blood Brothers Aid Inc., Dumaguete, where he actively educates and supports people with bleeding disorders.

The Doctor (ChatGPT) is In

Laurie Kelley May 17, 2026

A friend showed me how to use Chat GPT, which was alien to me, when we were in Panama, and she couldn’t get the rental car gas cap open to refuel. She showed a video of the problem to Chat GPT and talked to it like it was a regular person. And she—Chat GPT— talked back—and solved our problem.

I was enthralled, then hooked. I bought a subscription. I made a logo. I made a cartoon of myself. I researched history for a project—boom! I sought answers in science, astronomy, vacations and even rock bands. Answers came not in minutes but seconds! This was saving me hours and hours of research, and gave me new ideas. And it was very personalized, except it keeps calling me Laureen, which only my parents ever did when they were angry with me, or the Sisters of St. Jospeh in Middle School (who probably were mad at me too).

I thought about the days, weeks, month, years spent researching my books Raising a Child with Hemophilia and A Guide to Living with von Willebrand Disease. How much time could have been saved!

Then I wondered if people were turning to Chat GPT for problems they were having with their child with hemophilia. Were they asking things like, “What does a 5% level mean in hemophilia?” “What do I do when he as a multi-color bruise?” “My son just hit his head, What should I do?” Should we use Chat GPT this way? Is it helpful?

And it’s not just patients who are using AI, which is what Chat GPT is. Te-Ping Chen and Chao Deng in The Wall Street Journal say that health care has become the testing ground for Al. Among health systems, 27% are currently paying for commercial Al licenses, triple the rate across the U.S. economy. Doctors and administrators use it to take notes, “field phone calls, and deal with insurance claims” — and give health advice. A study last year found that “Al was better able to identify subtle signs of breast cancer” than human radiologists. And OpenAl, which owns Chat GPT) now inaugurated ChatGPT Health: Al can view medical records and wellness apps for a tailored medical response. More than 40 million people a day already turn to ChatGPT with health questions, and it’s available 24/7.

And usage is rising among patients. According to the New York Times, roughly one in six U.S. adults (and one-quarter of those under 30) use AI chatbots like ChatGPT for medical advice at least once a month. Why? People ask it to explain new symptoms, to research conditions, and to vet a doctor’s advice. Patients get tired of long wait times, short doctor appointments, and high medical bills.

Addressing these needs, some health systems are obtaining commercial AI licenses (27% in early 2026) to help manage patient messages. And as mentioned, OpenAI launched Chat GPT to allow AI to integrate with medical records and apps.

This is a new era, a Wild West, and there are concerns. “This has the potential to “backfire spectacularly,” said Parmy Olson in Bloomberg. People can be wary uploading their health records to a company that could use personal information for advertising purposes. For those of us with hemophilia and other bleeding disorders, this is a bit unnerving. Also, bleeding disorders require expert knowledge, as life and death could be involved. Is AI aware that bleeding disorders can be life threatening, of how serious bleeds can be?

Chat GPT is not infallible. I caught it in a couple of mistakes during my research, which it acknowledged—and then praised me! This made me extra careful whenever I asked it for a definitive, factual-based answer. I think these are called “hallucinations,” when chatbots provide dangerously incorrect information or fabricated advice.

Health care staff and patients look to resolve high prices, accurate information, privacy, and self-knowledge—how to manage a bleeding disorder at home. AI can support a lot and be a great starting point for discussion and question, but nothing can take the place of reaching out to parents who live with a bleeding disorder, in on-line Facebook groups, and most importantly, your hematology staff at your HTC. Other parents and Chatbots are good for supplementary advice and info, but ultimately, you need to see if you HTC hematologist in in.

“Dr. Chat GPT will see you now.” Pg 20 The Week magazine. 2.4.26

Chat GPT created this royalty-free, unique photo for this blog!

When We Ignored Mental Health

Laurie Kelley May 3, 2026

A long time ago—maybe too long for parents these days of young children with bleeding disorders but not long enough for those of us with kids born in the 1980s—mental health was not a big issue in our community. Were we healthier then? Have stronger families? Better character?

No. We were entirely focused on survival. It was the HIV era, when half our community was infected and passing away from a strange and insidious disease. Our community rallied, advocated, marched, demanded: safer products, payments for damage done and lives lost.

Then came quieter years: we had home delivery of factor; factor was safer; then recombinant products were introduced. And factor was plentiful.

Then came a Swedish study about joint damage and disease that made America realize that we need to protect our growing kids’ joints. Prophylaxis became our main concern.

Through it all, we didn’t seem to pay a lot of attention to something: mental health. Why would these kids have mental health issues when they had pain killers, HTCs, protection from future joint disease, education rights, safer products, prophy?

Because they are human. And many humans, regardless of life circumstances, can suffer from mental health issues like depression and anxiety. I first noticed this in inhibitor patients. Their path to physical freedom was not like the rest of us. They suffered terribly, still. Excellent products became available, but the high cost put additional and tremendous stress on families. Addiction to pain killers was a threat. We had overlooked all this in our celebration of safer products and prophy.

May is Mental Health Awareness month, so it’s a perfect time to think about mental health challenges that individuals with bleeding disorders and their families may often and still face.

As early as childhood, people with hemophilia may have difficulty forming and maintaining friendships due to hospital visits, perhaps avoiding certain activities that other children are free to enjoy. They may appear “different” because of bruises, needle marks, crutches, swollen joints, and even medical ID jewelry. They may struggle with social isolation, body image issues, and chronic pain, which can contribute to depression. Even within a family, siblings enjoy a certain sense of freedom they cannot.

What can we do? While focusing on preventing bleeds and securing proper medical care—all important—be aware too of potential mental health issues. Limit social media time and engage your child in your local bleeding disorder activities, so he or she can meet peers like them. Ask your HTC social worker what symptoms to identify. Make mental health part of your annual visit. Ask what programs are available in our community that can assist. Mental Health Matters Too is one, and the Bleeding Disorder Substance Use and Mental Health Coalition is another.

During Mental Health Awareness month and beyond, patients, parents, and caregivers should be aware of these mental health challenges. Together, we can support each other—and ourselves—throughout our bleeding disorder communities.