Vascular Ehlers Danlos

Hello, I am new to this page and hope I am posting about the correct topic. I am 22 years old and have just discovered I have all the symptoms of vascular ehlers danlos syndrome and have been wrongly accused of shaken baby syndrome on my 4 month old baby girl, who also appears to have the same diagnosis.

I am being referred to a rheumatologist by my consultant, does anyone know how long it could take here in the UK for an appointment to come through?

Thank you

Carla

5 Replies

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  • Hello sorry to hear you aren't well and having difficulties.

    I think it varies depending where you live. Did your doctor not give you any indication?

    Trish

  • CarlaAndrews ...I'm surprised you've been referred to Rheumatology and would've thought you'd be referred to Cardiology

    ehlers-danlos.org/about-eds...

    This might help.

  • As I read your post you've not yet been diagnosed? In which case rheumatology is the right place as they will need to diagnose you first. Cardiology is part of the management of VED.

    But if your consultant (what consultant? Or did you mean GP?) suspects VED then I would have thought you'd have an urgent referral. Otherwise the NHS standards are about 12 weeks, although some places are faster and others slower. You can ask you GP to help get an earlier appointment as well.

  • I shouldn't worry too much ......if your Consultant thought you had VED he would fast track an appointment for you.

    It is something you are born with...you don't develop it....so I think your little baby has probably not got it - as these days babies have quite comprehensive tests at birth.

    Relax & enjoy your little girl.....let's hope you don't have anything to worry about.

  • Waiting time for a rheumatology appt is a sore point in the UK. The NHS, and indeed the manufacturers of the drugs for RA which the NHS uses, do state that you should be seen within 12 weeks because the drugs have the best chance of working if started within 12 weeks of symptoms appearing.

    On the plus side for you, the NHS does seem to prioritise younger people if RA is suspected and you might well get an appt within a month or even a couple of weeks. You are also more likely to get an early appt as you have a baby to cope with. Clearly, you and your baby have some medical condition and it needs to be diagnosed asap.

    Those cases that have to wait for suspected RA seem to be older people. I developed it over two years ago and had to wait six months for a first appt, a year for an MRI and about 16/17 months before being offered the usual drugs, at the same time as being told they were unlikely to work because of the delay. Young people in the waiting room with me had all been waiting less than a month. The referral letter is also a factor and, as it is another specialist who has referred you rather than a GP (with their somewhat inaccurate letters), you have a good chance of an early appt.

    The medication did not work very well on me and I had serious side effects which seems to be on account of age. Therefore, if you are young and treatment starts early, you have a good chance of success.

    I think once you are over a certain age, the NHS answer is the scrap heap so far as RA is concerned.