A.S. Face 2212: Sanjo Jendayi

Peace & Blessings!

My birth name is Deserie Johnson but I write and perform under Sanjo Jendayi.

I was a sickly child growing up battling heart issues and seizures. I walked with my feet turning in (pigeon toed) and would trip over my feet. I had surgery when I was in 9th grade where they cut my hip bone, turned it outward some, put pins in it and left me on crutches for 6 months. A year and a half later they took the pins out and once again, I was on crutches for 6 months. Both times I had to re-learn how to walk again.

In my 20’s, I would have these really painful episodes where my back would just give out randomly. Doctors ran many tests and put me on many meds that did not help the pain. I went through this for years with different ‘possible’ diagnoses but nothing definitive. The pain had gotten so bad that I would be bedridden for weeks at a time. I had to have a cane and crutches handy at all times because a flare could happen at anytime.

My children had to help me get from the bed to the bathroom or I would crawl if home alone. I hated this life for them.

One day I awoke and couldn’t hear at all. Doctors put me on a high dosage of prednisone that made me gain 30lbs in 7 days. I didn’t even recognize myself when I looked in the mirror. My eyes were bloodshot red and my vision was blurred. Too many MRI’s, x-rays and doctors but no answers. I saw doctors at John’s Hopkins and Hodgkins, Lupus and a few other dis-eases were floating around.

Finally, in 2002, I was seeing a rheumatologist who took a blood test and an x-ray and voila! I was involuntarily inducted into the Ankylosing Spondylitis Warriors. He referred me to NIH for an AS study where we tried several different meds but nothing really helped.

Since then, I’ve been diagnosed with SARCOIDOSIS 2004 Skin, Liver, Lungs, Spleen
LUNG CANCER SURVIVOR 2006-2 Titanium clips left in chest
Pericarditis 2015
Mild Diffuse Interstitial Lung Disease 12/19
Pulmonary Pleura
Left Ventricular Hypertrophy 2020
Diverticulitis 2020
Atelectasis May 2021
Bilateral Sacroiliac Disease 2021
Sacroiliitis -12/21
Probable Bartholin cyst

During all of this I wrote books and performed Spokenword poetry. In 2013, I decided to take my life back by changing my eating habits, walking when I could, doing mini exercises when bedridden, learning more about each of these illnesses and going on a spiritual healing journey to get to the root cause of it all. Today, I’m in much better spirits and health. I am a Holistic Health Practitioner practicing several natural modalities to help others.

DON’T EVER GIVE UP! Our mindsets while battling illnesses is our most powerful resource. Hold on. Visualize yourself whole and healed and FEEL the feelings that go with that vision. See it daily. Talk kindly to your body, congratulate it for carrying you this far, then start thanking your body for healing from the top of your head to the souls of your feet. Let’s give AS a swift kick in the A*s!

Thank you so much for putting faces to Ankylosing Spondylitis.

Maryland, United States of America

One Response to “A.S. Face 2212: Sanjo Jendayi”

  1. Dear Sanjo,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

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