Help Me Fight CNS Lupus: A Plea for Urgent Medical Support
First, thank you from the bottom of my heart for simply taking the time to
watch this video and read my story.
My name is Maria and I am currently fighting a severe and fast-moving
form of Lupus that affects the brain and central nervous system, known as CNS
Lupus — also referred to as Neuropsychiatric Lupus. This condition is often
misdiagnosed, misunderstood, and tragically, it progresses rapidly.
Right now, I’m facing an overwhelming health battle. My symptoms have
intensified to include seizures, debilitating circulation problems, lung
inflammation, and nerve damage that has greatly impacted my mobility and
independence. I feel as though I am being robbed of the time I have left — trapped in a body that is deteriorating quickly and in
relentless pain.
This fundraiser is deeply personal. It’s organized by me and my daughter,
who is not only my biggest support but also an essential part of my daily care
team.
Why We Need Help:
·
Living in constant pain: Every day I wake
up facing a cycle of symptoms — vomiting, tremors, shortness of breath, hives,
skin inflammation, chest pain, heart palpitations, neuropathy, migraines, gum
pain, and cognitive issues. This is no way for anyone to live. Stable medical care
could reduce this agony and preserve what’s left of my health and quality of
life.
·
Loss of independence: My ability to walk
is impaired due to extensive nerve damage and circulation issues. I now rely on
a cane and fear further loss of mobility. My goal is to remain as independent
as possible for as long as I can.
·
Oral health emergency: CNS Lupus is now
affecting my oral health. I’ve already lost several teeth, making eating — and
maintaining proper nutrition — incredibly difficult. Poor nutrition only
worsens Lupus symptoms, creating a dangerous cycle.
·
Misdiagnosis and delays: Years of being
misdiagnosed have cost me precious time. We are now in a race against the
disease’s progression. Multiple appointments with specialists are necessary to
understand whether new symptoms are from Lupus or other conditions it may have
triggered — a common issue with autoimmune diseases. These appointments are
urgent but come with overwhelming financial strain.
·
Neurological decline: CNS Lupus is
attacking my brain. I experience severe migraines, memory loss, and
inflammation of the brain. We are currently awaiting results after a suspected
seizure, and I live with the terrifying possibility of spinal cord damage and
future cognitive decline.
·
Loss of vision: I am already legally
blind. Past chemical burn pain and frequent optic neuritis have taken a huge
toll. Each flare-up threatens to take what little vision I have left.
·
System breakdown: The back-and-forth
trial-and-error approach of the current medical system is not working. I am
desperate to establish consistent care with a specialist experienced in CNS
Lupus — someone who can create a comprehensive treatment plan before more
damage is done.
What Your Support Will Do:
Your donation will go directly toward:
·
Appointments with specialists and diagnostics
·
Ongoing pain and symptom management
·
Urgently needed dental treatment
·
Mobility aids and home support care
·
Life-preserving medications and treatments
·
Vision care and neurological monitoring
I love life, and I want to continue living it — not just surviving, but
experiencing these years with dignity, mobility, and memory. But I can’t do
this alone anymore. I’m reaching out because time is not on my side, and the
financial burden of this battle is one we can no longer carry alone.
From my heart, thank you for any support you are able to give — whether
through a donation, a share, or a kind word. Your compassion could truly help
save my life.
With gratitude,
Maria your Shakti DeviMea
