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National Epilepsy Week – Donna’s Story

Epilepsy doesn’t hold me back!

Following Rosie’s story last year for National Epilepsy Week, Donna, who lives at one of our Havering supported living services for people with learning disabilities, has shared her experience of living with epilepsy during this year’s awareness week.

Donna has lived with epilepsy since she was little. To give people who don’t have epilepsy an insight into what it is like, we caught up with Donna on Microsoft Teams during the coronavirus pandemic.

“I get a lot of seizures. Flashing lights affect me and they make me have fits and I fall on the floor” Donna explained. “Everyone knows we can’t have flashing lights at discos.” This doesn’t stop Donna having fun at Pom-Pom club and discos.

Another way Donna keeps safe is by taking medication. “I don’t have any more fits because I’m taking my medication. I have vitamin B12 injections in my arm which keeps me healthy.” We were worried if these were painful but Donna reassured us, “The injections don’t hurt – I fall asleep!”

Donna also spoke about how technology keeps her safe, whilst maintaining her independence. “I’ve got a door alarm so staff know when I’m in the bathroom and my name comes up on the telecare.  I have bubbles in my bath, I have everything! Staff stay in the bedroom. The alarm must be kept charged. The other people I live with know about the alarm to keep me safe.”

Whist being interviewed, Donna was wearing her red helmet. She had this to say about it, “It keeps me safe, protects my head and I’ve been wearing it since I’ve been an adult.” There is little warning though as she explained, “I don’t know I’m going to have a seizure.  I feel a bit shaky first and then call the staff.”

Donna mainly wears her helmet out in the community, however sometimes life can be difficult. “Some people out in the community laugh.  This makes me feel angry and frustrated and it upsets me. If I could say something to them to stop them I’d say ‘leave me alone, don’t make fun of me. I have a lot of seizures and this protects me’.”

Donna hasn’t let her epilepsy get in the way of living a busy and active life, “I’m always positive and fun. I go to college, I do sports, sit ups, skipping, roller skates and cycling to keep me fit!”

There is definitely no holding her back, go Donna!

I'm always positive and fun. I go to college, I do sports, sit ups, skipping, roller skates and cycling to keep me fit!

- Donna