Why We Are Supporting #Millions Missing 2018

Grab a cuppa and I’ll attempt to explain why we are supporting the #MillionsMissing protest on Saturday May 12th 2018. My son has been diagnosed with Myalgic Encephalomyelitis/ chronic fatigue syndrome.  Having symptoms of chronic fatigue for years however two years ago it began to totally strip away…

Help wanted. Hours must be flexible, pay poor. This job will interfere with your social life. Those with a morbid fear of doctors need not apply. The sheer amount of time that I spend ferrying myself or the kids to and from hospital appointments is insane.  With long-term conditions like Ehlers-Danlos syndrome, Charcot Marie Tooth Disease, Postural Orthostatic Tachycardia syndrome and Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome it’s all about management.  And management is all about being seen in loads of different hospital departments by a range of therapists and doctors all with the aim of helping you – well manage you – because no one has a magic pill to make all of this better.  Orthotics, OT, physio, respiratory physio, cardiology, rheumatology, neuromuscular, fatigue clinic, ophthalmology, orthopaedics, urology, gastroenterology (and I’ve probably forgotten a department)!  What this means for us is that at least once a week, sometimes more we trot off…

Restaurant Review – La Belle Epoque

££££ Terminal 5, London Heathrow Airport, Hounslow, TW6 2GD  +44 2035899658 Awarded 3 AA Rosettes, La Belle Epoque at Sofitel London Heathrow is the airport’s only fine-dining restaurant. Gourmet French cuisine draws from eclectic world influences.  The name, La Belle Epoque translates to ‘the beautiful era’, and pays homage to…

At this time, research statistics of the Ehlers-Danlos syndromes show the total prevalence as 1 in 2,500 to 1 in 5,000 people. However recent clinical experience suggests that Ehlers-Danlos syndrome may be much more common. Unless you know someone with Ehlers-Danlos syndrome (EDS) or Hypermobility Spectrum Disorder (HSD) or have one of these conditions yourself you have probably never heard of them.  Although the most common type of EDS, hypermobile type is not a rare condition, many medical professionals have very limited knowledge from their training, particularly about the multisystemic nature of the condition.  Other professionals, perhaps in the education system or the local health services may never have come across EDS/HSD before at all. So as patients and parents of patients we have come up against so pretty funny opinions from professional about EDS.  I don’t think in most cases that these comments are supposed to hurt or do…