Mother and daughter warn of rare anaemia disease that make even simple tasks a struggle

Stanford’s children’s health explains that those with the rare blood disorder do not make enough red blood cells. These cells are vital in carrying oxygen to all other cells in the body. Made in the spongy insides of long bones, known as bone marrow, the cells that would have become red blood cells often die off before reaching this stage, for those with DBA.

The condition is complex, and is commonly passed down through families, with 50 percent of children with the disorder having a gene defect.

Similar to other common anaemia conditions, such as Sickle Cell anaemia, vitamin deficiency anaemia and Iron deficiency anaemia symptoms of DBA can include fatigue, pale skin and a rapid heartbeat.

On the other hand however, DBA can cause more severe symptoms such as physical defects. These symptoms can affect the hands, head, neck, arms, kidneys, heart and genitals.

Talking exclusively to, Megan explained her personal journey with DBA and some of the side effects she has to deal with in her daily life.

She said: “I was diagnosed with Diamond Blackfan Anaemia before even being born as my oxygen levels were so low during pregnancy.

“I also have mild cerebral palsy that affects all of my limbs, but especially on the left side of my body.

“This makes even the simplest of tasks a struggle, such as opening bottle lids and tying my shoelace.

“My mum Jane was diagnosed with DBA at the age of four, and has been steroid dependent since then.

“Due to being on steroids for so long it has meant that she has a variety of other side effects, including osteoporosis.”

Stanford Children’s Health explains that osteoporosis is a common side effect of taking steroids over long periods of time, and leads to individuals having extremely fragile bones.

Luckily for Jane, she has never had any major broken bones, despite growing up a keen horse rider.

Medline Plus explains that those with DBA are at risk of a number of severe long-term conditions. This includes glaucoma, a condition that causes increased pressure in the eyes and can damage the optic nerve.

“Like me, my mum stays as positive about everything as possible,” Megan added.

“I try not to let my illness stop me from living my life, although sometimes it is difficult.”

In order to manage her condition, Megan has to go for regular blood transfusions. This is a lengthy process that takes up to six hours.

The NHS explains that blood transfusions are needed in order to replace the blood cells that individuals such as Megan and Jane cannot make.

“I have blood transfusions every three or four weeks,” Megan adds.

“I also have to take oral medication on a daily basis to stop a build up of iron in my body from all the blood.”

Diamond Blackfan Anaemia UK, is a small charity that supports patients with the condition here in Britain. The charity explains that an alternative treatment for DBA is a bone marrow transplant, although this proves to be tricky as the bone marrow has to be a good match with the individual’s body.

Megan hopes to raise awareness of DBA in order to not only educate people about the condition, but also educate doctors and nurses who again might be uneducated about DBA. She said that with education, when she goes for blood transfusions she will not feel so isolated.

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