Otterburn resident Ellie’s story of living with a rare form of dementia

Ellie, 33, lives with a rare genetic disorder which affects her brain and nervous system, and as a result has a rare form of dementia that affects her verbal communication, cognitive functioning, and ability to independently carry out activities of daily living.

Diagnosed two years ago with Mitochondrial Encephalopathy syndrome (MELAS), a hereditary disease that affects the body’s systems, in particular the brain and nervous system, Ellie lives at Exemplar Health Care’s specialist care home Otterburn in Birmingham.

Since her diagnosis in 2016, she now has dementia which is a side effect of MELAS and is caused by stroke episodes. Before her diagnosis, Ellie lived a normal life, worked as a nursery assistant, enjoyed shopping, socialising and keeping active.

Her dementia symptoms mean that she has lost the ability to form full sentences but is expressive in other ways. Ellie has muscle weakness and experiences seizures and has developed insulin dependent diabetes.

Symptoms of MELAS disease include muscle weakness and pain, recurrent headaches, loss of appetite, vomiting, and seizures. People also experience stroke-like episodes which lead to problems with movement and a loss of brain function.

Although Ellie lacks in verbal communication, the Exemplar Health Care team work closely with her to ensure she is living a fulfilling life doing things she enjoys. With assistance, Ellie is able to go to the local shopping centres where she enjoys buying new things.

As Ellie struggles to form verbal sentences, the care team have given her a computer and she is able to communicate via typing out statements and messages.

Caron Williams, Home Manager, said: “Now Ellie is living here at Exemplar Health Care, we can provide her with the specialist care she needs to live as normal life as possible.

“Our dedicated care teams work with her to ensure she is doing things she enjoys and keeps her engaged in activities. Ellie’s face lights up when she sees babies and animals. This is a delight to observe. Ellie continues to enjoy wearing make up and looking at her best.

“Her dementia means that she can’t properly communicate verbally, and requires assistance with all aspects of daily living although Ellie is encouraged to maintain her optimum independence. However, we work with her to make sure her care plan involves things she likes doing and what she likes to eat to make sure her life is the best it can possibly be.

“MELAS is life-limiting, so we all work together with Ellie to ensure she gets to do everything she wants to do whilst she can still enjoy it. This mostly involves going shopping as she loves getting new things and having a look around the shops.”