Your questions, our answers
Welcome to the FAQ section of Life Of A Medical Mom x2. Here, we address the most common inquiries about our family's journey, the complex medical conditions of our children, and the inspiration behind this blog. We aim to provide clear, honest answers to help you feel informed and connected.
Frequently asked questions
Navigating life with complex medical needs brings a unique set of challenges and questions. This section covers topics often asked by our community and those new to our story.
What is CLOVES syndrome?
CLOVES syndrome is a rare, complex overgrowth syndrome affecting multiple body parts. It stands for Congenital Lipomatous Overgrowth, Vascular Malformations, Epidermal Nevi, and Spinal/Skeletal Anomalies. It can manifest differently in each individual.
How were they diagnosed?
The diagnostic journey for complex medical conditions like CLOVES and CLN6 Batten Syndromes can be long and challenging. Our children's diagnoses involved extensive genetic testing, imaging, and consultations with multiple specialists over time to piece together their unique health profiles.
Why did you start this blog?
I started the Life Of A Medical Mom x2 blog because I desperately wished there was a place for me to connect with others who truly understood what it’s like to raise children with complex medical needs. My goal is to share our unfiltered story of exhaustion, grief, love, resentment, and hope, so no parent feels alone.
What type of support is available for medical parents?
There are various forms of support available, from online communities and support groups to financial aid programs and respite care services. We often share resources and connect with other organizations that offer assistance. While I can't offer financial aid directly, I can help point you towards valuable resources.
What can I expect from the "Life Of A Medical Mom x2" blog?
You can expect an honest, unfiltered look at our family's life with complex medical needs. This blog is a space for shared experiences, insights into navigating medical challenges, and finding strength in vulnerability. Even if I can't help financially, I can find you resources and be a person who understands and listens.
What is CLN6 Batten syndrome?
CLN6 Batten Syndrome is a rare, inherited neurodegenerative disorder, one of the many forms of Batten Disease. It causes progressive deterioration of cognitive and motor skills, vision, and eventually leads to significant health challenges. It's a very challenging diagnosis with no cure currently.
What are the symptoms of these syndromes?
Symptoms vary widely for CLOVES syndrome, often including fatty tumors, vascular malformations, and skeletal issues. For CLN6 Batten Syndrome, symptoms typically involve developmental regression, seizures, vision loss, and declining neurological function. Each child's experience is unique.
How do the syndromes affect your everyday life?
The syndromes profoundly affect our everyday life, requiring constant medical care, frequent appointments, specialized equipment, and significant adjustments to our family routine. It's a journey filled with exhaustion, emotional highs and lows, but also immense love and resilience as we advocate for our children.
How rare are CLOVES and CLN6 Batten syndromes?
Both CLOVES syndrome and CLN6 Batten Syndrome are extremely rare. CLOVES affects approximately 1 in a million births, and Batten disease (all forms) affects around 2 to 4 children per 100,000 live births globally, with CLN6 being a specific subtype. Their rarity often means less public awareness and fewer specialized resources.
What help can i get as a medical parent?
As a medical parent, you can seek help through support groups for rare diseases, patient advocacy organizations, government assistance programs for children with special needs, and local community services. Don't hesitate to reach out to your medical team for social work referrals. Our blog aims to share helpful resources we discover.
Connecting through shared journeys
Our journey as a medical family is complex, but it's also a testament to love, resilience, and the power of connection. We invite you to explore more of our story, find solace in shared experiences, and know that you are not alone in this.