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…

 Last month we attended an appointment with one of our children where the consultant opened, without knowing our family, by saying that he didn’t believe in their hEDS diagnosis.  Actually he didn’t believe ‘type 3 EDS’ was real at all.   This led me to pick up my labels post again, two years on and this has even more relevance in my life today. If medical professionals are so keen to dismiss diagnoses from their esteemed colleagues, even when it is not their area of expertise, who benefits from the label and as parents why do we even bother?  We believe that our beautiful children are themselves no matter what label is assigned to their particular medical condition, we see all their amazing qualities in full technicolor.  We love them dearly and love has no labels.  Having a name for something does not change who they are deep down, their personalities,…

Burnout – 8 Signs of Caregiver Burnout

I have three children, all affected differently with elements of Hypermobility Spectrum disorder (HSD), Hypermobile Ehlers-Danlos syndrome (hEDS) and Charcot Marie Tooth disease (CMT) and new to the ever-growing list this year is Chronic Fatigue syndrome (CFS/ME).  As well as having hEDS and CMT myself. We would describe…