LIVING TO PROVE THE EXPERTS WRONG

Elvie Ingoli proved the doctors wrong

After receiving chemotherapy for Bone Marrow Transplant at the age of 6; and after receiving yet more chemo to treat an ensuing cancer at 13 …

#The doctors said she would never get pregnant …

#When she got pregnant, they said the pregnancy would ‘come down’ on its own …

This is the amazing story of Sickle Cell Warrior, Elvie Ingoli, President of the Germany-based sickle cell organization, Interessengemeinschaft Sichelzellkrankheit und Thalassämie e.V.

Born in Düsseldorf, Germany in 1984, Elvie Ingoli was diagnosed HbSS after a screaming episode of high fever and ‘yellow eyes’. She was just 3 months old. Two of her 11 siblings were also found with sickle cell anaemia.

Externally unobserved, the disease wrecked damage to the infant from within. By the time she was 6 years old, it was Bone Marrow Transplant – or else …

Bone Marrow Transplant

The science of BMT was still in its infancy in 1991 when Elvie opted in – rather her parents opted in on her behalf. She was only 6 and had no idea what the treatment meant. As it held the promise of obliterating some of the indelible marks of pain long seared into her consciousness, she was all for it.

Incidentally, Elvie was the first German with sickle cell to undergo BMT. The Transplant was performed in Brussels, Belgium as there was no hospital in Germany at the time that could do it.

Her sister was a full match, and the transplant was a success. A third of the family’s SCD ordeal was over (yet another family member would undertake the procedure later on as an adult).

Elvie looked forward to a new lease on life, one devoid of pain and frequent blood transfusion and frequent hospital visits and admissions.

Harvest and Famine

Elvie had seven years’ harvest of good health which hardly prepared her for the famine which lay ahead. An unforeseen complication, not of SCD, but of the cure itself, lurked within, quietly ravaging her bones.

At 13 years of age, after months of her doctors overlooking her symptoms, the young sickle cell warrior was found with cancer of the bone, Osteo-sarcoma.

‘It was an emotionally devastating experience for me and my family, that new and unwelcome diagnosis,’ says Elvie.

Happy Family – the Ingolis

Proving The Medics Wrong

It was believed that the chemotherapeutic concoctions Elvie took preparatory to BMT would compromise her reproductive system. The gynecologists plainly stated would never be a mom. And when she had to undergo chemo again for the cancer, they said it was a cinch, a certainty, she would never ever conceive.

Elvie proved the doctors wrong – twice.

‘When I became pregnant, the doctors were surprised but said I couldn’t possibly carry the pregnancy to term.’

Some said the pregnancy would come down in three months.

She did carry the pregnancy to term and safely delivered by CS. Elvie’s baby boy was 6 months old when she got pregnant again. She carried that one too to term and delivered, again by CS. Another boy.

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