What you don't know about me | Living with an invisible illness

   I have never written a post that is so unbelievably personal. Having said that, I feel it is finally time to break the silence and spread awareness...

       I have Common Variable Immunodeficiency (CVID).

    What is CVID? CVID is a genetic gene mutation which is a type of Primary Immunodeficiency (PI) that is defined as an immune system dysfunction. The cause is not known.  CVID is characterized by a low level of specific antibodies (immunoglobulins) in the fluid portion of the blood. This results in a decreased ability to fight off invading microorganisms, toxins, or other foreign substances. As antibody production is impaired, vaccines are NOT effective. Such vaccines are, MMR, PNEUMONIA, FLU, CHICKEN POX...etc Recurrent bacterial infections particularly the upper and lower respiratory tracts are common. These recurring infections can lead to lung disease and life threatening complications. CVID causes gastrointestinal complications. Abdominal pain, inflammation are prevalent. Nausea, vomiting, diarrhea, and weight loss are just a few issues. Gastro problems also affect the ability to absorb nutrients and vitamins my body needs. CVID causes abnormal accumulations of lymphocytes in lymphoid tissue such as lymph nodes. In addition, people with CVID are more prone to developing certain types of cancers such as, lymphoma and stomach cancer. The risk of gastric carcinoma is 50 times greater in patients with CVID. CVID causes granular inflammatory nodules within tissue of the skin, lungs, spleen, and liver. CVID causes severe fatigue, migraines, joint pain, muscle pain, and much, MUCH more. CVID causes your organs to shut down and stop working.

           There is NO CURE for CVID.  

      I have to have life long immunoglobulin therapy which is administered intravenously, with antibodies obtained from the fluid portion of about 10,000 blood donors every month to live. These infusions cause many side effects and are VERY expensive (over $10,000 per month). 

      Since an infant I was constantly sick. At age 9 I was admitted to the hospital with Pneumonia and the doctors told my parents I had a 50-50 chance of surviving the admission. This is when I was finally diagnosed with CVID. Since then I have been admitted to the hospital countless times, sometimes for months at a time. I've lost my hair, all of my skin has fallen off, I've been in septic shock (multiple times), and literally close to dying (more than once).

    I spent the first half of my Junior year in high school in the hospital (I was completely unrecognizable as a result of the side effects) and the second half of my Junior year wearing a wig to school as I had lost all of my hair. I would slip to the bathroom in between classes to apply a special cream to my raw and burned skin, hoping to tolerate the pain long enough to make it until class was over.

    I have had IVIG treatments as often as weekly for up to 3 hours per infusion. I would estimate that I have roughly been stuck over 3,500 times with needles and IV catheters during my life. I have undergone ultraviolet light therapy, dozens of biopsies, central lines, and even chemotherapy. My body is covered in scars and often I have to cover "flare-ups" with concealer or long pants. I have been admitted to some of the top hospitals in the Nation and sometimes I talk to my doctor more than some members of my family.  

    I have only ever gone without my infusion twice in my life. Both times were for a span of several months due to insurance changes (once while I was pregnant!) ...and both times I ended up in the hospital, too weak to even take a shower. 

   In spite of this, I have been lucky enough to live a "normal life." I have carried and delivered two healthy and beautiful babies. I work full-time as a nurse and I continue to nurture my growing business. On the outside, you would never know. 

     I'm guessing that 99.99% of the people reading this post right now never knew this about me. There are several reasons for this: 

  • It's an invisible disease. One of the diseases that people may have and have to go through life day and in and day out and no one ever knows. 
  • I don't exactly go around screaming it from the roof tops. I am not exactly one who likes being the focus of attention, so it never seemed like something to share with the general public. 
  • There is almost NO awareness for CVID.

   So this brings me to my reason for this blog post...help me spread the word. You know the pink ribbon is for breast cancer but did you know what the zebra ribbon is for?

   Did you know that April is national CVID awareness month? Help me spread the word and bring awareness! If you happen to see me out and about do not hesitate to stop me and ask me for a pretty Zebra ribbon. I will have them on me and I am happy to give them away! Don't live in the area? Send me your address and I am happy to mail some your way!

               Let's shower April with Zebra stripes! 

***Also, Don't forget to donate blood if you are able to! (IVIG, also called gamma globulin or antibodies, is a highly purified blood product preparation that is derived from large pools of plasma donors. Plasma from approximately 1,000 to 10,000 persons is present in each unit.) Your blood is literally our lifeline!


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