Now in her twenties, Hazel, from Nottingham, was left with some complex and unpredictable after-effects. She tells her story.
“Hi, my name is Hazel Williams. I am 25 years old and live in Nottingham in the UK.
“My meningitis story began when I was a baby at just eight weeks old. I was diagnosed with Group B Strep meningitis after becoming very ill and being rushed to hospital.
“Not long after the meningitis and whilst at home recovering, the doctors started to notice that my head circumference had begun to increase at a quicker rate than it should have done for a baby.
Can lead to brain damage
“After a few scans and tests I was diagnosed with hydrocephalus as a result of the damage that the meningitis had done to my brain. For those that don’t know, hydrocephalus is a build up of cerebral spinal fluid (CSF) on the brain. The excess fluid puts pressure on the brain, which can lead to brain damage. I also have a damaged sixth nerve in my right eye due to the complications of the meningitis and hydrocephalus.
“There is no cure for hydrocephalus and the only treatment involves brain surgery. When I was diagnosed at four months, they attempted many surgeries to release the pressure in the brain. I was then fitted with a VP (ventricular-peritoneal) shunt. As a shunt is only a piece of plastic it is not guaranteed that they will last long. After one or two failed shunts before reaching the age of 1, I was then fortunate enough for the shunt to last until my 12th birthday, when it needed to be replaced.
“From age 12 up until I was 24 (last year) I have been fortunate to not have needed any brain surgery, even though I had dealt with ongoing and undiagnosed headaches for 10 years.
Unpredictable
“Then, on 12 August 2019, we had just come back from holiday and I had woken up with the worst headache ever - my shunt had failed. Since then, I’ve had a further four operations to replace or fix the shunt, with my most recent hospital admission being in May 2020.
“Having a condition as unpredictable and unknown as hydrocephalus has always made me thankful for the now and not to take anything for granted.
“In February of this year whilst posting on a Facebook help group for survivors of meningitis, a member of Meningitis Now got in contact with me and wanted to know whether I would like to join the Believe & Achieve programme.
“Believe & Achieve is for young people aged 14 to 25 who have been directly or indirectly impacted by meningitis. It offers a variety of different activities, including support, life coaching and peer mentoring, as well as counselling. It also gives you the opportunity to share your own experiences with others.
“Since joining Believe & Achieve I have been fortunate enough to have received advice, support through Messenger, had six coaching sessions, attended an online social evening and I have already made friends with some people who also struggle with similar after-effects from meningitis.
Far more beneficial than I expected
“The coaching I’ve had has been far more beneficial than I ever expected. It has helped me to gain confidence, try new things, and most importantly it has given me the courage to start up my own craft and design business.
“In the last month since having the coaching sessions I have set up an Etsy shop, Facebook page and Instagram account in order to advertise and sell wall prints, tote bags and Christmas cards, all designed by me. I’ve not only sold to people I know but also many people up and down the country and I’ve even had an international sale.
“My main aim going into the coaching was to find something which I not only love doing but something that I would also be able to turn from a hobby into a small business and to have the ability to work from home in order to make it easier to cope with the after-effects of meningitis. Through having the coaching, this goal has become far more achievable that I ever expected it to be.
“I can’t thank Meningitis Now enough for how much they’ve helped me over the last year.”
