Making Lupus Visible, One Story at a Time
May is Lupus Awareness Month, and this month touches my heart in a very personal way.
For me, lupus awareness is not just another topic on the calendar. It is connected to my family, my love, and my granddaughter. My 16-month-old granddaughter has been diagnosed with type 1 familial chilblain lupus, and watching how the cold can affect her little body has opened my eyes in a deeper way.
When something like this touches your family, awareness becomes more than information. It becomes personal. It becomes a reason to learn, share, speak up, and help others understand what so many families are quietly walking through.
Lupus is a long-term autoimmune disease, which means the immune system can mistakenly attack healthy cells and tissues. It can affect different parts of the body, including the skin, joints, and internal organs, and symptoms can vary from person to person. Because symptoms may come and go, lupus can sometimes be hard to recognize or diagnose.
Some common signs people may experience include extreme tiredness, joint or muscle pain, skin rashes, fever, hair loss, mouth sores, and sensitivity to sunlight.
For my granddaughter, her diagnosis is a rare form called familial chilblain lupus, which can begin in infancy or childhood and may cause cold-triggered skin reactions, often appearing as red or purple patches or sores on areas like the fingers, toes, nose, cheeks, or ears.
That is why this month matters so much to me.
It reminds me that behind every diagnosis is a real person. A baby. A parent. A grandparent. A family learning, adjusting, praying, researching, and doing their best one day at a time.
Why Lupus Awareness Matters
Lupus is often called an invisible illness because someone may look fine on the outside while dealing with pain, fatigue, inflammation, skin changes, or other symptoms on the inside. For some people, symptoms may be mild. For others, lupus can deeply affect daily life.
Awareness helps people feel less alone. It helps families feel seen. It helps communities become more compassionate. And it reminds us not to judge what we cannot always see.
This month is not about fear. It is about understanding.
It is about helping more people learn what lupus is, how it can show up, and why support matters.
A Reminder for Families
If you or someone you love is walking through lupus or any chronic condition, please know this: your experience matters.
There may be days when you feel strong and hopeful. There may be days when you feel overwhelmed. Both are real. Both deserve grace.
As families, we may not always have all the answers right away, but we can keep learning. We can ask questions. We can advocate. We can protect peace. We can create routines that support the body, mind, and spirit while still following medical guidance from trusted healthcare professionals.
Supporting the Body with Gentle Care
At Exploring New Blessings, I believe healing and wellness include the whole person: body, mind, and spirit.
That does not mean replacing medical care. It means supporting ourselves with simple habits that help us feel more grounded and intentional.
During Lupus Awareness Month, this may look like:
Choosing nourishing foods when possible.
Staying hydrated.
Getting enough rest.
Protecting your peace.
Listening to your body.
Creating calmer routines.
Being gentle with yourself on the hard days.
Supporting loved ones without making them feel like a burden.
Sometimes the smallest acts of care can bring comfort.
My Heart This Month
This May, I am standing in awareness for my granddaughter.
I am standing with families who are learning what lupus means for their loved ones.
I am standing with those who live with symptoms others may not fully understand.
And I am standing with every person who needs more compassion, more education, and more support.
Lupus awareness matters because people matter.
Our stories matter.
And when we share with love, we help make the invisible a little more visible.
Closing Reflection
This month, let us lead with compassion.
Let us be slower to judge and quicker to understand.
Let us remember that some battles are quiet, but that does not make them any less significant.
And let us continue to bring awareness, love, and hope to the people and families affected by lupus.
With love,
Terri Penzerro
Exploring New Blessings
Gentle Disclaimer:
This blog is for awareness, encouragement, and educational purposes only. It is not medical advice and should not replace guidance from a licensed healthcare professional. Always speak with a trusted medical provider about symptoms, diagnosis, or treatment options.