For Amanda Hays, DPT, physical therapy is about helping people feel confident in their bodies and participate in the activities and experiences that are meaningful to them.
At the Center for Inherited Blood Disorders (CIBD), Amanda works with people living with sickle cell disease (SCD) through comprehensive clinic visits and outpatient physical therapy. She focuses on the ways pain, fatigue, endurance, and other physical challenges may affect a person’s daily life, working with each patient to develop strategies that support their individual goals.
Before joining CIBD, Amanda spent the majority of her career in a pediatric inpatient setting, where she cared for children and adolescents with SCD who were hospitalized with pain crises and acute chest syndrome. That experience helped shape the whole-person approach she brings to her work today.
The Role of Physical Therapy in Sickle Cell Disease
Physical therapy can support many aspects of movement and function for people with SCD. Rather than focusing on a single physical symptom, Amanda looks at how different challenges may affect a person’s ability to participate in everyday activities.
What role does physical therapy play in sickle cell disease care?
Amanda shares, “Physical therapy helps people with SCD maintain and improve their mobility, strength, endurance, and ability to participate in the activities that are important to them by addressing musculoskeletal impairments, pain, fatigue, and breathing limitations.”
The goal is not simply to improve physical abilities, but to connect them to what matters in a patient’s life. For some people, that may mean having more endurance for work or school. For others, it may mean being able to exercise, travel, spend time with family and friends, or participate in other meaningful activities.
Understanding Physical Challenges
SCD can affect movement and activity in a number of ways, and those challenges may look different from one person to another.
What kinds of challenges might you see in patients with SCD?
“Patients with SCD may experience pain, stiffness, weakness, fatigue, decreased endurance, or difficulty with mobility. We may also see complications such as avascular necrosis, particularly in the hips and shoulders, as well as cardiopulmonary limitations that can affect someone’s ability to tolerate activity.”
Understanding what a patient is experiencing and how those experiences affect their everyday life helps Amanda determine where physical therapy may be most useful.
Pain and Physical Therapy
Pain is one of the challenges that can have a significant impact on daily function. In physical therapy, Amanda considers not only the presence of pain, but how it may be affecting a person’s ability to do the things they need or want to do.
How does pain factor into physical therapy for someone with SCD?
“Pain can significantly affect quality of life, so we assess how pain is impacting a person’s function and daily activities. We can then use gentle movement, positioning, breathing, relaxation, and other pain-modulation strategies to help patients manage symptoms while respecting their individual tolerance.”
This approach is not about pushing through pain. Instead, Amanda works with patients to identify strategies that respect their individual tolerance while supporting function and quality of life.
Adding Tools to Pain Management
Physical therapy can also give patients additional strategies they can use alongside their medical treatment.
What are non-pharmacological pain management strategies, and how can PT help?
“PT can teach strategies such as breathing and relaxation techniques, gentle movement, positioning, massage, Transcutaneous Electrical Nerve Stimulation (TENS), graded motor imagery, and activity pacing to help modulate pain. These strategies are individualized and are meant to complement, rather than replace, medical pain management.”
Physical Therapy Isn’t Just About Exercise
One of the most common perceptions of physical therapy is that it is primarily about exercise or strengthening. While those can certainly be part of PT, Amanda’s work encompasses much more.
Does physical therapy mean someone has to exercise or work out?
“Not at all! Physical therapy is about helping you move and function in ways that support your goals, which may or may not involve traditional exercise. We can work on things like breathing, endurance, positioning, activity modification, pain management, or finding ways to make daily activities easier.”
That flexibility is particularly important when working with people whose symptoms and energy levels may vary. A physical therapy plan can be adjusted based on what a patient needs and what their body can manage at that time.
What to Expect During a PT Visit at CIBD
For patients who are new to physical therapy, the first step may be simpler than they expect: a conversation.
What can a patient expect during a physical therapy visit at CIBD?
“We start by talking about how you’re feeling and how pain, fatigue, mobility, or endurance may be affecting your daily life. We may assess movement, strength, balance, range of motion, walking, breathing, or endurance, and then work together on individualized strategies to help you function and participate in the things that are important to you.”
Looking Beyond the Diagnosis
Amanda’s experience working in pediatric inpatient care gave her the opportunity to see firsthand how physical health, emotional wellbeing, and everyday experiences can intersect.
You have experience caring for children and adolescents with SCD. How has that shaped your work today?
“Working with children and adolescents taught me to look beyond the diagnosis and understand the whole person, including how stress, anxiety, and mental health can influence how someone experiences and copes with pain. Whether that’s playing with friends, participating in school, exercising, working, or traveling, I try to connect PT interventions to what’s meaningful to each patient while also giving them tools to manage stress and pain in a more holistic way.”
That perspective continues to influence how Amanda works with patients at CIBD.
Getting to Know the Person Behind the Diagnosis
For Amanda, building relationships with patients is one of the most rewarding parts of her work.
What do you enjoy most about working with people with sickle cell disease?
“What I enjoy most is getting to know each person beyond their diagnosis and helping them work toward the things that are meaningful to them. It’s incredibly rewarding to see someone gain confidence in their body, find strategies that help them manage pain or fatigue, and feel more able to participate in the activities and life experiences they value.”
What Amanda Wants People with SCD to Know About Physical Therapy
Amanda hopes patients understand that physical therapy can benefit people at many different levels of mobility, function, and activity. PT is not only for people who are highly active or looking to improve their strength or fitness. Instead, care can be adapted to meet each patient where they are and support what they need that day.
Is there anything you wish more people understood about physical therapy and sickle cell disease?
“I wish more people understood that physical therapy isn’t just about exercise or strengthening, and that someone with SCD doesn’t have to be in perfect health to benefit from PT. We can help with pain management, mobility, endurance, breathing, energy conservation, stress management, and adapting activities to what someone’s body needs that day. PT is really about helping people feel more confident in their bodies and participate in life in a way that is safe, meaningful, and sustainable.”
By adapting care to how someone is feeling and what they need that day, Amanda helps patients find practical ways to support movement and function without losing sight of the bigger picture: living a life that feels meaningful to them.
Supporting the Whole Person
By having physical therapy integrated into our multidisciplinary team, patients have access to another resource for addressing the physical challenges that can come with sickle cell disease.
To learn more about physical therapy or whether PT may be appropriate for you or your family member, talk with your CIBD care team.
CIBD Clinic: (714) 221-1200