Receiving a new diagnosis
Welcome to MACS: Supporting Families Through Diagnosis and Beyond
Receiving a new diagnosis can be an emotional and overwhelming experience. Whether you’re a parent navigating this journey for your child or an individual receiving a diagnosis later in life, you are not alone. At MACS, we understand the uncertainty, questions, and emotions that come with a diagnosis of Microphthalmia, Anophthalmia, or Coloboma. Our mission is to provide support, guidance, and a welcoming community for individuals and families affected by MACS conditions.
About MACS
MACS (Microphthalmia, Anophthalmia, and Coloboma Support) is a dedicated community that offers practical advice, emotional reassurance, and opportunities to connect with others on a similar path. While medical professionals play a key role in diagnosis and treatment, we offer lived experience, peer support, and a safe space to share and learn from one another. Our resources and network are designed to help you navigate the early days of a diagnosis, as well as the ongoing journey ahead.
What to Expect
A MACS diagnosis can come at any stage of life—from infancy to adulthood. While many assume these conditions are identified at birth, diagnosis can often happen later in childhood or adolescence. Processing this information is deeply personal, and there is no right or wrong way to feel.
Understanding the journey ahead can make a world of difference. Medical assessments, genetic testing, and specialist consultations may be part of your experience. We aim to demystify these processes by sharing insights from our community and guiding you through what to expect.
How We Support You
At MACS, we provide a variety of support services, including:
- Helpline & Direct Support:Whether you need guidance or simply someone to listen, our team is here for you.
- Online Communities:Join our monitored Facebook groups and WhatsApp communities to connect with others facing similar experiences.
- Virtual & In-Person Events:From Zoom meetups to regional gatherings, we create opportunities to build relationships and find support.
- Family & Individual Activities:Our programs, including outdoor adventures and specialized holidays, provide enriching experiences for individuals and families.
We also offer practical resources to help with everyday challenges, from navigating vision and light sensitivity to advocating for the right medical assessments. Our network of families and individuals shares insights, tips, and encouragement to help you and your child lead a fulfilling life.
Join Our Community
No one should have to face a diagnosis alone. By joining MACS, you become part of a compassionate and understanding community ready to support you every step of the way. Whether you’re looking for information, emotional support, or simply the reassurance that your child can thrive, we’re here to help.
Explore our resources, connect with other families, and discover the many ways MACS can support you. Together, we can build a future filled with opportunity, resilience, and hope.
Here is more information on this topic, available as a printable leaflet or text-only PDF. Feel free to download and use it as needed.
Additional support from MACS
If you require additional support, please contact enquiries@macs.org.uk
