How You Can Help

There are wonderful people living their lives, but not feeling their best and can’t figure out why! Here’s how you can help!

There are beautiful, new, precious babies that are plagued with infections or failing to thrive and their sweet parents are desperately trying to figure out why!

There are amazing doctors treating these patients everyday that aren’t looking at their patients as possible Zebras! (What the heck is a Zebra you ask…patience, grasshopper…I’ll explain below!)

There are Zebras (I’d rather be called a Unicorn personally but such is life!) living among us who need our help, guidance and support!

There are foundations like the Primary Immunodeficiency Foundation that need our support to help these Zebras get the medical treatment they need!

ZEBRAS DEFINED:

Per the Ehlers-Danlos Support UK website:

When you hear the sound of hooves, think horses, not zebras.”

This phrase is taught to medical students throughout their training.In medicine, the term “zebra” is used in reference to a rare disease or condition.  Doctors are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses.  Doctors learn to expect common conditions.But many medical professionals seem to forget that “zebras” DO exist and so getting a diagnosis and treatment can be more difficult for sufferers of rare conditions.  Ehlers-Danlos syndrome is considered a rare condition and so EDS sufferers are known as medical zebras. This identity has now been adopted across the world through social media to help bring our community together.

CVID DEFINED (THE SHORT VERSION):

CVID is complex and so is explaining it!

So, I’m going to defer to Wikipedia’s definition which in my opinion is the easiest to understand for those non-medical/science folks (like me!):

Common variable immunodeficiency (CVID) is an immune disorder characterized by recurrent infections and low antibody levels, specifically in immunoglobulin (Ig) types IgG, IgM and IgA.[1] Generally symptoms include high susceptibility to foreign invaders, chronic lung disease, and inflammation and infection of the gastrointestinal tract.[1] However, symptoms vary greatly between people. CVID is a lifelong disease…Treatment options are limited, and usually include lifelong immunoglobulin replacement therapy.[4] 

This therapy is thought to help reduce bacterial infections. This treatment alone is not wholly effective, and many people still experience other symptoms like lung disease and noninfectious inflammatory symptoms.

*Note from Susan Alynne: although CVID and the immune system in general is in its early stages of full understanding by the medical community, the cause is thought to be genetically-related. It is so in my case. My 13-year-old son has CVID and my 9-year-old son has Subclass IgG Immune Deficiency.

I’M NOT ASKING FOR YOUR MONEY…

(although if you find it in your heart to make a donation please go to the Primary Immune Deficiency Foundation’s website as it is a wonderful foundation that advocates for research, health insurance coverage, and overall support for Zebras.)

I’m asking you to become knowledgeable and spread awareness about CVID because you or someone you know and love may not be living his or her best life.

The fact is, it often takes five to fifteen years after the noticeable onset of autoimmune disorders and/or the noticeable inability to fight off bacterial infections and viruses for a person to be diagnosed correctly.

FOR ME, IT TOOK TEN YEARS!

During that time, damage was done to my bladder because my own immune system attacked it.

This is an autoimmune disorder called Interstitial Cystitis for which I ended up on antibiotics for one year. I finally had a surgical procedure which thankfully solved the immediate problem even though I still live with pelvic pain and bladder issues daily.

Many Zebras with CVID often end up with numerous autoimmune disorders that can attack their organs during the time it takes to receive the correct diagnosis and treatment.

Here’s what I need you to do:

Step 1 –

Help us spread awareness! Like our Facebook page! Follow me on Instagram, Twitter, and Pinterest! TELL others, including the medical professionals you visit about CVID and Primary Immunodeficiency. You never know who you might help by spreading the word! Contact me if you have questions or need assistance!

Give every doctor you see a copy of these handouts:

Step 2 –

Give plasma! Find a donation center near you and GET PAID (up to $500!) for donating your plasma! Below is a list, although there are more! Why not bring a friend or few!

CSL Plasma

Grifols

Biotest Plasma Center

BPL Plasma

KEDPLASMA (U.S.)

B Positive Plasma

GCAM Plasma

Octapharma Plasma

BioLife Plasma Services

THAT’S IT! THEN GO FEEL GOOD ABOUT YOURSELF!

YOU DESERVE IT!