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Mental Health

Resources

Welcome to our mental health resources page, specially designed for individuals who are navigating the challenges of CLAs while prioritizing their mental well-being. LGDA is committed to fostering a community where you can access the resources and guidance you need to achieve both physical and emotional well-being on your journey.

Supporting the Mental Health Needs of Rare Disease Patients, Families, and Communities: Recorded October 16, 2024 During this session, therapist Dr. Al Freedman (an SMA dad) provides tools and resources for supporting the mental health needs of rare disease patients, families and communities.


A rare disease diagnosis doesn’t just impact the individual—it affects the entire family. The emotional, physical, and mental strain can be overwhelming for patients, parents, caregivers, and siblings alike. Navigating the uncertainties of Complex Lymphatic Anomalies (CLAs) can bring feelings of fear, anxiety, stress, and isolation. That’s why taking care of your mental health is just as important as managing physical health.

Whether you are living with a CLA, caring for a loved one, or supporting a sibling, your mental well-being matters. Finding the right support and resources can help you cope, build resilience, and connect with others who understand what you’re going through.

On this page, you’ll find:

  • Reading Material – Articles and guides to help you understand and manage the emotional impact of living with a rare disease.
  • Expert Insights – A video by Al Freedman, PhD, a psychologist and rare disease parent, offering guidance on mental health and coping strategies.
  • Support Organizations – Links to trusted resources providing mental health support for patients, caregivers, and families.

You are not alone. Support is available to help you through every step of this journey. Explore the resources below and take care of your mental health today. 


Here are three recommended resources that provide tailored mental health care for individuals and families navigating complex health challenges:

Rareminds
Rareminds is a pioneering nonprofit organization based in the UK, offering specialized counselling and psychotherapy services specifically for the rare disease community. Established in 2014, Rareminds’ mission is to make affordable, accessible mental health care an integral part of rare disease treatment. Through online counselling and wellbeing services, they support individuals in navigating the psychological and emotional aspects of rare conditions. 

Rare Counselling - Dr. Albert Freedman
Dr. Albert Freedman, PhD, is a licensed psychologist with a specialized practice serving patients and families affected by rare diseases and complex medical conditions. With clients across 40 states in the USA, Dr. Freedman provides counselling services designed to meet the unique mental health needs of individuals and families dealing with rare diseases. 

Global Genes is committed to providing information, resources and connections to all communities affected by rare diseases.

Protecting Mental Health as a Caregiver

Being a caregiver is more than just a role—it’s a commitment of the heart. Whether you're helping a child, a spouse, a parent, or a friend, your days are often filled with compassion, responsibility, and selflessness. But in the midst of giving so much to someone else, it’s easy to forget to care for one very important person: yourself.

While “caregiver” is technically defined as someone who assists a person who can’t fully care for themselves due to age, illness, or disability, the lived experience often goes far beyond that definition. The emotional and physical energy required can be overwhelming, and if not addressed, the toll it takes on your well-being can be serious.

The Quiet Weight of Caregiving

Burnout isn’t just about feeling tired—it’s a deep, ongoing exhaustion that can impact every part of your life. When you’re constantly focused on someone else’s needs, it’s easy to overlook your own.

Caregiving can lead to chronic stress that builds up over time. Without adequate support, this stress can affect your physical health, emotional balance, and mental well-being. Many caregivers report feeling anxious, overwhelmed, or emotionally drained. These feelings are normal—but they’re also signals that it’s time to pause and care for yourself, too.

It’s important to recognize that you’re carrying a heavy emotional load. Whether it’s managing complex medical tasks, navigating uncertainty, or simply being “on” all the time, caregiving demands a great deal of strength. Acknowledging the weight of that responsibility is the first step toward finding balance.

Recognizing the Warning Signs

So how do you know if the stress is becoming too much? There are often early warning signs that signal it's time to step back and check in with yourself:

  • Emotional changes: Feeling persistently sad, irritable, overwhelmed, or hopeless
  • Physical effects: Chronic fatigue, trouble sleeping, changes in appetite, or frequent illness
  • Behavioral shifts: Pulling away from friends and hobbies, missing appointments, or leaning more heavily on alcohol or medication

Over time, these symptoms can grow into something much more serious. That’s why early recognition—and action—is key.

Taking Care of the Caregiver

You can't pour from an empty cup. To continue being a source of strength for your loved one, you need to invest in your own well-being. Here are a few steps that can make a real difference:

  • Find Your Community: You’re not alone. Support groups and caregiver organizations offer a space to connect, share, and learn from others facing similar challenges. Whether online or in person, these communities can be lifelines.
  • Make Space for You: Even small moments of self-care matter. Go for a walk, enjoy a favorite hobby, or simply rest. Taking care of your body and mind isn’t selfish—it’s necessary.
  • Explore Respite Options: Temporary help from respite care providers can offer you time to recharge. It’s okay to take a break, and it doesn’t make you any less dedicated.
  • Be Realistic: You don’t have to do it all, and you certainly don’t have to do it perfectly. Let go of guilt, ask for help, and accept that your best is enough.
  • Talk to a Professional: Therapists or counselors trained in caregiver issues can help you navigate the emotional rollercoaster and build tools for resilience.
You’re Doing Important Work—Take Care of Yourself, Too

Caregivers are the unsung heroes in so many lives. But even heroes need support. By recognizing the early signs of stress, reaching out for help, and taking intentional steps to care for yourself, you can continue your caregiving journey with greater strength and stability.

And always remember: it's okay to rest. It's okay to ask for help. You matter, too.

Resources

Mental Health America provides an online self-assessment questionnaire at screening.mhanational.org 

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