Original hEDS diagnosis wrongly coded at hospital despite rheumy consult letter - recurrent error. What should I do?

[TumericGold]

Hi fellow zebras.

Despite having a confirmation letter a couple of years ago explaining I do have hEDS from the rheumatologist who diagnosed it, I discovered it’s been wrongly coded at hospital level as HSD so have to keep correcting anyone who refers to it either in other hospital outpatient or some GP contacts.

I’ve even sent the original letter back to my GP surgery to prove this.

Does this clerical error really matter as I keep explaining it should be hEDS as I go along - or should I try to get it corrected at hospital level somehow?

I ask as post-menopause I am getting lots of systemic and joint pain, plus now this week a growth in my neck which a GP has referred me for an urgent ultrasound to investigate.

[Trickysite]

write to Pals at hospital. They correct complaints

[TumericGold in reply to Trickysite]

Thanks Trickysite, I would but PALS at our hospital trust is linked with the main complaints team who were less useful than a wet lettuce when dealing with a serious complaint for my parent’s bad treatment by the system.

[Trickysite in reply to TumericGold]

I would try again as things/people may have changed since your bad experience with your parents. What you are asking for is very simple and should not cause them to get their knickers in a twist. Emma x

[Marcilhac]

Hi

I have one diagnosis of hEDS (from a Rhuematocogist at my local hospital) and one of HSD (at UCLH a year later) I dont think it matters much. Certainly the specialist Physio at University College London Hospital's hypermobiity unit said the symptoms were exactly the same and and in his view one is not more symptomatic or more serious than the other. The new designation HSD was created around the time I got diagnosed. My understanding is that the Medical researchers were perhaps trying to separate out those patients who had very obvious symptoms from early childhood from the rest and that this was in order to narrow down the search (so far unsuccessful) for a genetic marker for hEDS. So perhaps some of us were born that way and some acquired the problem. I think the only thing that matters is that your GP understands the problem and certainly using hEDS terminology is more likely to be recognised by GPs. But frankly I wouldnt bother about it too much. The HSD symptoms list is identical.

In my case I suspect my HSD/ hEDS is a secondary condition resulting from a genetic disorder Systemic Mastocytosis which I have had confirmed by genetic testing. In Systemic Mastocytosis the mutated Mast Cells inflame and damage connective tissue throughout the body. Hence the association of joint dislocation etc with allergies, anaphylaxis and digestive problems. But we will have to wait for the definitive research ....

[TumericGold]

Thank you Marcilac, that makes sense. Guess I’ll have to explain the links between the two to the initiatives when I encounter them along the way. Good to know it doesn’t really matter.

Hope you get some good care for these cumulative aspects which are stacking up. 🤞

Re. your theory, I was a bendy “double jointed” kid doing improbable & unwise contortions and joint pops from earliest memories. I wish I had a fraction of that rubber-jointedness now! 😅