iN Answeer to your question Labrynth OLeary - can anyone tag her for me please? WHY bother to get an EDS (Ehlers-Danlos Syndrome) diagnosis? How will that help me ? 20 GOOD REASONS 1 it is genetic so you may want to know for your kids/ grandkids who may get it worse than you - and to avoid passing it on if you plan on kids 2 there are associated cardiovascular risks so you need to have an echocardiogram every 5 years - for all types of EDS esp to rule out aortic arch issues. 3 it is a great relief if you get a diagnosis because, when you understand it, it explains all your symptoms logically and you do not feel like you are crazy, depressed, anxious or have social phobias - EDS has physical reasons for all these. 4 they estimate that one in every 100 people have it but are just undiagnosed - if we all get diagnosed and the huge numbers with EDS are realised we will get more research and a possible cure. 5 There are great symptomatic management strategies for it once you now what you are dealing with - and getting a correct diagnosis is a basic right. 6 you can connect with others who have it too which is a great relief and a good source of information 7 there are pregnancy risks such as post partum haemorrhage and miscarriages which you can be on the alert for 8 there are dental issues like poor teeth, dental crowding and periodontitis that you may want to take extra care over - EDSers often need more local anaesthetic for dental procedures for example. 9 sometimes it helps you realise what other symptoms you DO have - eg you may not know what brain fog is til you read about it as I did and it clicks - oh yes, that is those days when I lie in bed all day and can do nothing and feel like i have a hangover for no reason...same with heat intolerance - why you are worse in the heat, photophobia (sensitive to light) , hyperacousia (sensitive to noise) etc 10 there are many eye issues associated with it such as near sightedness and detached retina so you may want to let your optometrist/ophthalmologist know about it. 11 It can help if you are giving up smoking to know that nicotine is a stimulant and part of the reason you feel bad is that smoking seems to mask some of your EDS symptoms so you feel better when you smoke....ditto for caffeine which is a vasoconstrictor so if you are addicted to cola drinks..... 12 some of the symptoms - brain fog , crashes, can feel like depression when they seem to hit out of the blue - these can be relieved by treatments such as rehydrating with electrolytes, wearing compression garments etc and maybe you do not have depression after all.... 13 It can help explain seemingly unrelated issues involving multiple body systems. Also why an injury can move from one joint to another (e.g. you splint your wrist, and it may cause problems in the neighbouring joints - eg. thumb and elbow because all the joints are susceptible to overuse injuries.) 14 You can get appropriate management with knowledgeable healthcare providers (e.g. physios who know about hypermobility and what kinds of treatments to do/exercises to give) and learn joint protection strategies. And you can avoid unnecessary treatments and tests. 15 EDS can pre-dispose you to allergies which can lead to a risk or possiblity of anaphylaxis. 16 EDS is now being linked to MCAD - mast cell activation disorder - which for many is treatable with new protocols that bring great symptomatic relief (eg Zyrtec/Zantac Combo) 17 Another one of the symptoms is dysphagia (or difficulty swallowing) and choking on fluids, food or sometimes just your saliva- this of course can also be potentially very dangerous indeed. 18 This point is from Dr David Chorley: Oh and I just thought of a real life example from my own medical practice (yes Im a doctor who knows about EDS) : A significant number of EDS patients have blood clotting problems, so I have initiated my own protocol (!) of screening teenage EDS girls for Protein C+S, Anti-thrombin III, Factor V Leiden and homocysteine. Out of my 150 EDS patients I have found about 10 with defects. This is huge because if a young woman goes on Birth Control Pill with a clotting disorder she can have a stroke or myocardial infarct. 19. Anyone with EDS should totally AVOID fluoroquinolone antibiotics which can cause damage to connective tissues like tendons and ligaments. 20 AORTIC DISSECTION IS OFTEN MISSED AND MIS-DIAGNOSED AS A(sometimes fatal) HEART ATTACK (as sadly happened with actor John Ritter) WHY all types of EDSers need an echocardiogram at least every 5 years - to check the aortic arch thedoctorstv/videolib/init/1548 (Please feel free to copy and share this widely without acknowledgement - Except for Dr David Chorleys excellent point; he would like acknowledgement to remain included please. please note tho that as it has a link to the John Ritter article if you press share it will ONLY share the John Ritter link not the full text - to share the text you need to actually copy and paste the actual text) Someone with vasculat type added this useful comment too: The comorbid conditions are much easier to look for/into if you have an EDS diagnosis. Doctors (especially in the ER) will take you more seriously with anything if you have an EDS diagnosis. Im 25 and I have osteopenia, but no-one would have thought to give me a DEXA scan except my geneticist who knew about my EDS. No one would have thought that I had grade B erosion of my esophagus except that I was throwing up blood. I had to ask for a tilt table test to diagnose my POTS myself. My cardio didnt think it would matter. An ER takes me more seriously when I have blood in my urine, knowing that I have EDS and possible vascular type. There are so many benefits to a diagnosis and unfortunately a lot of them are in how doctors themselves treat you. Also, EDS presents certain amount of symptoms. While others are not too common with EDS. The blood in my urine can be either Vascular EDS or is caused by something else (according to my geneticist). I have an increase in CK levels - probably not due to EDS. I have slowing on my EEG and elevated pulmonary pressures, again probably not due to EDS. But without a diagnosis/geneticist/EDS specialist I would not know any of that. So now I can get other things diagnosed as well.
Posted on: Wed, 21 Jan 2015 01:03:25 +0000
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