Sunday, June 16, 2019
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The “Invisible” Lupie?

Hello again Lovies!

A lot of us kicked off this week honoring National Invisible Illness Awareness Week (September 13th-19th) by sharing our own personal “30 Things You May Not Know About My Invisible Illness“, which was a great way to share what some of our own lives are like living with a illness that is not always visible just by appearances!

I’d like to take today to SHINE a light on all the men who are living with lupus. Yes! Men have lupus too! It is often a common misconception that lupus is a “women’s disease”, however men can develop lupus at ANY age! For every 10 people that get diagnosed with lupus: 9 are female, and 1 is male. So often we find the various women living with lupus speaking out, being active, and demonstrating remarkable strength while the men also living with this illness are barely mentioned, often forgotten, and left feeling somewhat…invisible.

Well, I’m here to remind us all that MEN who live with lupus are STRONG too and they ARE visible despite their illness!

Lupus Facts About Men (Courtesy of the LFA)

  • Before puberty, approximately 1 male will develop lupus for every 3 females.
  • In teens and adults, approximately 1 male will develop lupus for every 10 females.
  • After age 50, approximately 1 man will develop lupus for every 8 women. The decrease in the ratio of lupus in older man and women might be related to the fact that older men develop lupus more often than younger men, or because hormones have less of an effect in older women.
  • These gender differences are seen only in systemic lupus, not in cutaneous (skin) lupus.
John Rivera

Today I’ll be sharing the remarkable story of a young man named John Rivera, and yes he has Lupus too!

John, now 19, was diagnosed with systemic lupus erythematosus (SLE) at the tender age of 13!

“It was summer time so you know the weather was warm, sunny, and hot. I had just about every symptom possible; if you ran down the entire lupus symptom checklist at your rheumatologist? I just about had every one of ’em! Swollen joints, shortness of breathe, the butterfly rash, a fever of 101 degrees, etc! At first I thought I just had the flu…or growing pains.”

It was after being admitted into the ER of the Women’s and Children’s Hospital of Buffalo in New York; confined in the ICU unit for three whole months that he realized something was definitely wrong. It turns out that John had 2.1 liters of fluid surrounding his lungs, which in turn was causing the shortness of breathe! It took three entire days for the doctors to remove the fluid with a chest tube only to regain it all back on the fourth day! That is how out of control his systemic lupus was. His doctors prescribed him imuran (an immunosuppressant medication), prednisone (a corticosteroid hormone), and plaquenil (an anti-malarial medication) which finally began to manage his life-threatening symptoms. To his doctors he seemed a rare case, because lupus is often commonly mistaken as a “female disease”.  All seemed safe…

…until John turned sixteen. He was hit with a furious flare which attacked his kidneys; diagnosed with stage four lupus nephritis! This meant higher doses of prednisone and being introduced to cellcept (an inmmunosuppressant) and cytoxan (a chemotherapy medication) all in effort to salvage his kidneys. After a year of the attempt failing; John’s name was written on the kidney transplant list. September 5th, 2009 marks the date he received his kidney transplant!

I ask him how his journey with lupus has affected his life, and he cheerfully responds,

Living with lupus has affected my life in so many ways, but I refuse to view it in a negative light! I have learned that staying out of the sun is vital to my health as well as avoiding crowds and people who are sick. One thing I love about my journey is ALL the remarkable and amazing people I have met along the way! There are several medical professionals (a Doctor Wargula & Nurse Mary O’Shay) that have made a strong impact in my life!”

He continues to say,

“Living with Lupus has made me STRONGER! I’m a fighter! I control my illness, it does NOT control me! I’m thankful everyday for all of the wonderful support of my friends and family members who help me spread lupus awareness. It is my dream to graduate from college one day and become a fine physician who finds a cure for our invisible illness known as Lupus!”

John is currently is currently majoring in pediatric surgery at the University of Buffalo. His hobbies are spending time with friends and family, enjoying parties, oil painting, and living life to the fullest! He feels that life is too short to dwell on our past when we have so much to look forward to in the future, and I couldn’t agree more! His favorite motto is: “Live each day as if there is NO tomorrow and live it STRONG!” His systemic lupus and lupus nephritis are safely under control for now; currently taking 1mg Prograf, 180mg Myfortic, 200mg Plaquenil, 40mg Nexium, and only 5mg of Prednisone.

John is one of many male lupus patients who are speaking out and spreading awareness about lupus. His declaration “I am NOT invisible!” is familiar to many of us living with lupus, and other invisible illnesses. He is proof that we are NOT invisible, and that no matter how tough our illness gets that we can rise ABOVE it! We are NOT are illnesses lovies, remember it! If you’re having doubts, find a friend, because what are friends for if not to remind us that we are stronger than that which ails us. I am reminding YOU that you are STRONGER STILL! NEVER GIVE IN! *Lupies hugs & kisses* Xo

“Each One Can Reach One!”

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

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8 comments

  1. Thanks for the wonderful post!

    My grandpa, who lost his fight in January, was diagnosed with SLE about 5 years prior to my diagnosis of SLE in Jan. of 03′. Because of his diagnosis, after I got sick in 99′, I made sure I was checked regularly knowing that it ran in my family. Because of my grandpa’s diagnosis, I knew what to look for. Knew to be checked. If it wasn’t for him, I probably would’ve gone undiagnosed for years.

    We’re NOT invisible!

    • My condolences go out to you lovie <3 Thank you for sharing your thoughts!
      I am glad you had someone who could showed you what lupus was like preventing you from years of being misdiagnosed. No matter what we are here, survivors and we are definitely NOT invisible!

  2. It is truly wonderful to see all the awareness about Lupus! I’ve been diagnosed ten years now thit
    Systemic Lupus! Been a uphill battle for me! But I am stronger because of Lupus! I don’t
    Feel sad about having Lupus! I feel empowered, and is always in fighting mode. I have
    Lupus! Lupus doesn’t have me

  3. Thank you for shedding light on males! Our 15 year old son was diagnosed with SLE last summer! We have thrown ourselves into raising awareness! I am going to Tweet about your site and post on FB!

    THANK YOU!

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