My Battle With A Rare Disease

By Peace Anyiam-Osigwe

On her Birthday in 2021, celebrated AMAA Founder, Poet, Script Writer, Filmmaker, Philanthropist, Entrepreneur, Peace Anyiam-Osigwe, MFR, gave an inkling, in writing, into the disease which finally, perhaps, took her life. Titled “God’s Tattooed Tattoo”, she wrote on her  courageous over 10-year struggle with the ill-health. She passed away on January 9, 2023 at the age of 53 years.

My birthday comes along once again; I’m so grateful. Over ten years ago, I started a journey with an auto-immune system problem that deals with skin discolouration and thickening of the skin — a form of fibrosis.

It appeared like a dot on the skin on my hand. My sister, Elvira, noticed it; we thought it was a basic fungal infection, and then we started with different fungal treatments. This was just the beginning of a long journey.

The CHI was on a journey to give me tattoos of His own on my skin. My skin changed colour, going into patches of white. My arms were worse hit, but it didn’t affect my legs. We thought it was vitiligo, but the Dermatologist said it wasn’t.

We were given so many diagnoses, yielding many names like Morphia and more. Doctors from London, India, Cuba, the US, etc., gave different names, and my body was cut up in different places for tests; injections on my butt created a work of art on it.

My whole body became God’s tattoo design. Depression had set in, alongside anger and other issues. There were also a lot of pains, as medication made me feel terrible. Steroids really slowed me down, till a Cuban doctor explained that steroids are not good for the long term. I then started a journey of alternative therapies that included spending weeks at the Ayurvedic center in Kerela, India, becoming vegetarian for a long while.

My Aunty saw me in Church one day and was shocked. She took it upon herself to walk me through the herbal alternative which worked with basically the things the Auryvedic doctor recommended. However, they added Shea butter and there were numerous leaves to be boiled and drank. The Benedictine Monks at Ewu took it up too with oils, herbal mixtures, drugs, etc.

The pigmentation started coming back.

For my late brother Micheal, he needed his sister to fully recover. The thickness of the skin made finding my vein difficult; only Dr. Chiazor could be patient enough to find it. He had to start traveling with us whenever we travelled.

Did I mention I spent six weeks in Israel? But most of my solutions were found on the African continent.

I have regained 85% repigmentation.

I found a doctor in South Africa who finally had a diagnosis — it was. Scleroderma.

There are two types of Progressive Systemic Sclerosis (PSS), sometimes known as just Systemic Sclerosis (SS), and CREST syndrome. Patients with Systemic Scleroderma may experience symptoms that affect the esophagus, intestines, lungs, heart, and kidneys.

CREST syndrome is named after its symptoms: calcinosis (calcium accumulation under the skin), Raynaud phenomenon (redness or blueness of fingers and toes), esophageal dysfunction, sclerodactyly (thickening and tightness of the skin that surrounds the fingers and toes), and telangiectasia (red skin blotches causes by dilated blood vessels).

In addition to the skin symptoms caused by scleroderma, patients may experience joint pain, shortness of breath, wheezing, constipation or diarrhea, bloating, weight loss, heartburn, or eye itching and burning.

With the CHI on my side, I didn’t have the full on. Systemic issues mostly surfaces but we had a Management team some of the best rheumatologists and Natural herb healers have been able to keep me in good health .

Yes, it’s an uncomfortable problem but thankfully, I was able to find people who helped me arrest this illness using orthodox and unorthodox methods.

It has been ten long years of having the CHI at my back. So, when you look at my patches on my skin, that’s my special God’s tattoo on my skin. I have learned to live with the lemons and made lemonade of it.

With the global COVID-19 pandemic, my team was worried — anyone with an immune issue had to be — but looking back, I think I got COVID-19 before all the noise.

On a trip, I noticed the non-stop coughing, shortness of breath, etc. We thought I had a flare-up of Scleroderma, and we applied all the remedies, but the cough and fatigue persisted.

Brother Mathew came to my rescue with some Pax mixtures which were dispatched. He had me on bitter kola, turmeric, and honey. The cough finally disappeared, the back pain was something else, but we had CBD oil to the rescue, and at a point, Moonshine was also part of the medication.

The pandemic took its toll on many of us mentally; we lived in fear, we lost family and friends. We couldn’t attend funerals to commiserate with loved ones who needed a hug.

Loneliness engulfed many, some took their lives as business crashed, and inability to cope with life demands. But in this same pandemic, some goodness appeared.

I had enough time to communicate with the CHI of the Most High. I was able to become extremely grateful for my personal journey.

As my birthday approached, my Dentist said to me, “Peace, talk about your healing.”

My brothers and I were brought to have absolute faith in the CHI of the Most High and at the height of this illness, my late brother, Michael, started saying a set of Psalms and prayers that Daddy always used for us especially Psalm 91.

When he passed, I put the collection of prayers together and published them in a book entitled, On This Rock I Stand.

For every one of you having any challenges, be strong in faith, find your tribe, embrace your journey. Live intentionally.

Blessings always.

Meanwhile, love the sea so to celebrate my birthday, my crew took me to the beach, the fact through it all we are still here doing what we do best …to all of my “Tribe “ that been on this journey together I just have to say a big thank you… to the people who listen ,to mum, brothers, aunties, children, doctors, my blended coffee…To Every single person that has been part of the AMAA journey the past 17 years thank you so much, Gracias onto the next decade and beyond.

Birthday of gratitude.

Culled from Medium.Com