Luton mum fighting rare Sickle Cell Disease on mission to raise £55K for cure

A courageous Luton mother is determined to beat a rare blood disorder, as she hopes to raise £55,000 and undergo a life-changing transplant.

Wednesday, 14th March 2018, 4:10 pm
Updated Wednesday, 14th March 2018, 5:25 pm
Anusjka in hospital. She has a son AJ (11) and daughter, Annabelle (1)

Mother-of-two Anusjka Regis-Etumnu has battled Sickle Cell Anaemia (Sickle Cell Disease) since birth, describing her life as “39 years of excruciating pain”.

The disease is caused by an inherited abnormal hemoglobin (an oxygen-carrying protein) meaning red blood cells become distorted - prone to rupture and block blood vessels - with sufferers fighting organ damage, fatigue and pain.

Anusjka said: “There once was no cure for Sickle Cell Anaemia but now it is not just a dream! The procedure, developed at the National Institutes of Health in Maryland, relies on transplanted stem cells from a healthy, tissue-matched, full sibling.

Anusjka and Pete-Ann

“These produce healthy new blood cells in the patient, eventually in sufficient quantity to eliminate symptoms of sickle. In many cases, distorted cells are gone.

“My sister Pete-Ann Bartholomew, is a full match and I am extremely excited about the possibility that one day I may be able to live and not just survive.”

Indeed, life for Anusjka has been a fight, as during her childhood in the Caribbean she had “lots of hospital admissions” and could not take part in sports.

However, she thanks her parents “the most vital support network of a Sickle Cell sufferer” for their love and dedication, as Peter and Ann-Rose would sit up in the middle of the night with Anusjka, rubbing her hands and legs when she was in pain.

Anusjka's mother looking after her in hospital.

After GCSEs, Anusjka moved to the UK and went to study a nursing diploma.

She said: “I have had many death defying experiences in my life. I was 22 in London when I collapsed suddenly in the street, screaming in excruciating pain.”

Since then, brave Anusjka has had to have both her hips replaced as the “bones died” and although unrelated, she had a tumour removed from her spine in 2016.

Yet despite all the setbacks, Anusjka is looking to the future: “The stem cell transplant is still considered a trial, so the treatment has to be done privately in London.

Anusjka with Annabelle and AJ

“My parents and sister are so excited, everyone is really supportive. However, I need to to raise funds as soon as possible, as Sickle Cell Disease can cause organ failure and death at any time. It also impacts my children; I have to cancel so many events.”

One of Anusjka’s bravest moments was asking her partner, Anayo, if he had the Sickle Cell trait - if they had both had the faulty gene, their future children could have inherited the disease. Thankfully he didn’t.

Now,she urges Luton readers to take a blood test, and check if their partners have the trait; in the UK, it’s particularly common in people with an African or Caribbean background, however any ethnicity can be affected.

To donate:

Anusjka and Pete-Ann
Anusjka's mother looking after her in hospital.
Anusjka with Annabelle and AJ