‘I was dying and didn’t realise it for seven years – my organs were shutting down.’

A young woman had been dying for seven years as her organs shut down gradually, but she had no idea.

After enduring excruciating symptoms, Ivy Adelle was ultimately identified with a rare blood condition.

As a youngster, the 27-year-old estate agent from San Francisco, California, began feeling ill.

At the age of 15, she began to feel quite weak and her tummy began to expand.

Despite recurrent sickness and witnessing her urine change to the colour “of cola,” she ignored the indicators of disease.

Ivy had her period at the start of the school year, but she didn’t have another for two months.
She eventually got so tired that she would frequently fall asleep during lessons.

She only became concerned when she had her period at the conclusion of the school year and her blood had a “blackish colour.”

“I was terrified; I feared I had cancer or that something was seriously wrong with me,” she explained.

Ivy was afraid to go to the doctor because it was expensive, and she didn’t want to “burden” her parents in case she was OK and “overreacting.”

She blamed her inability to focus at school on her own “lack of concern” or on the fact that she “wasn’t trying hard enough.”

Ivy was aware that females occasionally cease having periods owing to amenorrhea, and she suspected this was the case because she was a bit underweight.

“I felt like I had sandbags all over my body,” she stated, “along with terrible migraines and episodes of mood swings, loss of appetite, and some minor pains.”

Her stomach also got “slightly huge and rigid,” and her condition worsened until she was sent to the hospital four weeks later.

Ivy collapsed in front of her parents that summer, in June 2010, and was brought to the hospital by ambulance.

She was initially diagnosed with an eating disorder because she was pale and her blood sugar was low.

However, physicians quickly discovered that she was suffering from organ failure and was on the verge of death.

“I was surprised to realise I was dying, and this is what slow death felt like,” Ivy said.

Due to her low blood levels, she described herself as “very much out of it,” and the news was “quite alarming.”

Doctors advised Ivy to contact her closest friends and family, but she was “upset and outraged” as well as numb from the extreme pain.

“I felt like I was being punished by life,” she explained, “and I just wanted to enjoy my friends and family since I was so young.”

Ivy was diagnosed with auto-immune hemolytic anaemia, cold agglutinins illness, and antiphospholipid syndrome.

However, because testing might take years, they didn’t realise it was caused by systemic lupus at the time.

Finally, in June 2018, Ivy was diagnosed with lupus, an autoimmune disease in which the immune system destroys healthy tissues and organs.

Auto-immune haemolytic illness is a rare red blood cell ailment in which antibodies are produced to kill these cells. It is associated with cold agglutinins – the onset – as well as antiphospholipid syndrome, which induces the antibodies by mistake.

The blood illness is thought to be the outcome of Ivy’s untreated lupus combined with extreme stress.

She was transported to a hospital in Sacramento, California, with expertise in the illness, since she required a blood transfusion right away.

Ivy described the search for a blood match as a “race against time.”