THE 11th annual Rare Disease Day – always on the last day of February – was marked this year in over 80 countries around the world.

In the Fareham area, the Day saw a gathering of zebras at Brookfield Community School: zebras of a human variety, that is.

‘Zebra’ is the way that many people with rare diseases describe themselves, and particularly those who suffer from Ehlers-Danlos Syndrome (EDS).

EDS is a condition – often inherited – that affects the connective tissues in the body.

In serious cases, regular symptoms can include joints dislocating, organs tearing, curvature of the spine, fragile eyes and delayed healing of wounds. Acute pain and exhaustion are common side-effects.

The zebras were attending a meeting of the Solent Area Support Group, run by volunteers on behalf of the charity Ehlers Danlos Support UK.

Several were newly diagnosed and coming to terms with the life-long implications of their condition.

Others were well used to dealing with the challenges of life with EDS, and keen to share the companionship and experience of fellow sufferers.

During the meeting, participants enjoyed a practical session on mindfulness, led by local counsellors Pat Nicholson and Susie France.

Mindfulness can be an important tool in managing chronic pain, and can be practised by anyone, almost anywhere.

Attending the support meeting, which takes place on a quarterly basis at community venues in the Solent Area, were the group’s oldest zebra Jean – who turned 80 just before Christmas – and its youngest member, six-year-old Oliver from Park Gate Primary School.

Oliver’s mum – who also has EDS - said, “It’s hard having a rare disease, which people have never heard of and don’t understand. EDS is particularly tricky because every EDS patient has a different combination of symptoms, and many of those are invisible for much of the time.

"So when you are at junior school, you can imagine how difficult it is to look after yourself – let alone for your teachers and friends to understand your needs and to protect you from all the small but potentially serious hazards that could land you in hospital at the drop of a hat.”

Rare Disease Day is an opportunity to raise awareness of a wide variety of diseases among the general public, policy makers, public authorities, industry representatives, researchers and health professionals.

Organisers the European Organisation for Rare Diseases say that one in 20 of us will suffer from a rare disease at some point in our lives.

They add that most of these rare diseases go undiagnosed and have no known cure.

EDS, which has only been identified as an illness in relatively recent times, is often not recognised by doctors, and has no cure.

Many doctors simply don’t believe in it, and many patients say that the care provided by hospitals is patchy and uncoordinated.

EDS UK area co-ordinator Eloise Appleby said, “We are heartened by conversations with Southampton General Hospital, who recognise that the diagnosis and management of EDS is poor and are keen to address this.

"In the meantime, people are suffering 24 hours a day – but often achieving amazing things in spite of this. I am in awe of our zebra community.”

The next meeting of the group will be in April. Eloise welcomes enquiries from people wanting to find out more about the condition. She can be contacted on southamptonedsuk@gmail.com or 07713 876 168. You can also find out more about free membership of EDS UK at www.ehlers-danlos.org/