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Mental Health

Videos

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.

Here are two 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. 

Nurturing Your Relationship While Coping with a CLA: A Guide for Couples and Parents

Being part of a couple or a parent caring for a child with a rare condition brings its own set of challenges and rewards. Here's how to navigate these complexities and strengthen your relationship: 

Understanding the Dynamics 

  • Unique Challenges: Managing time, resources, and responsibilities amidst the demands of a rare condition. 
  • Unspoken Assumptions: Our beliefs about life and relationships are shaped by our upbringing, personal history, and cultural background. These can become more apparent during times of stress. 

Coping Strategies for Relationships 

  • Effective Communication: Make time for open, honest conversations. Addressing issues together as a team fosters understanding and unity. 
  • Recognizing Differences: Appreciate that partners may cope differently with stress. Respect these differences and learn from each other's strengths. 
  • Making Time for Each Other: Schedule regular check-ins or date nights to reconnect without focusing on health or caregiving responsibilities. 
  • Asking for Support: Don't hesitate to communicate your needs clearly. Partners aren't mind readers, and asking for help strengthens your bond. 

Dealing with Challenges 

  • Sharing Emotions: Discussing feelings of frustration or sadness about the impact of the rare condition can prevent misunderstandings and strengthen emotional support. 
  • Navigating Roles: Clarify roles and expectations. If one partner feels less involved or uncertain, initiate a conversation to find a balance that works for both. 

What Helps? 

  • Talking It Out: "Discussing how we each cope with difficult situations has brought us closer. It helps us support each other better." 
  • Scheduled Check-Ins: Regularly set aside time to reconnect and share without the pressure of health concerns. 
  • Focus on Normalcy: Enjoy simple activities together—like meals, walks, or games—to nurture your relationship beyond the challenges. 
  • Ask for What You Need: "Sometimes, I just need a hug. Asking for it made a big difference in feeling supported." 

Navigating the impact of a rare condition on relationship requires patience, understanding, and proactive communication. Taking these steps can help you and your partner or family maintain a strong, supportive connection amidst challenges.  

For more well-being insights and support, explore resources at Rareminds - https://www.rareminds.org/wellbeing-hub/ . Strengthen your relationship by understanding each other's needs and fostering a supportive environment. 

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