EDS and other “Rare” diseases.

Most practitioners will come across a, “rare” disorder from time to time. I use quotation marks because many of these diseases are much more common than the official statistics imply because they are hugely under-diagnosed. Perhaps not surprising given that many of those seeing these patients will never have knowingly come across many of these disorders.

I received the following in response to a comment I put on a friend’s Facebook post today,

Dave Jackson thank you from all of us genetically mutated people. Thanks you for believing us and wanting to learn more. You Sir, are an awesome practitioner. I wish there were more like you out there. It does give me a tiny bit of hope that I will find someone like you to help guide my self taught eds therapy that I do. Much love from the Zebra community.”

This because I have taken the trouble to learn about EDS (a connective tissue disorder that causes hypermobility and numerous other problems.) I first took the trouble to learn about it because my friend has it. It has since been useful to me in my NHS job before I took early retirement and in my role as an Aromatherapy and Massage practitioner.

It is vitally important that those (both in the conventional medical system and complementary sector)  take the trouble to learn about these conditions when they encounter them and above all LISTEN TO THEIR CLIENTS/PATIENTS!

Those with rare conditions are often experts compared even to the doctors treating them and certainly compared to me as an aromatherapist, even with my background in nursing.

Listening to the two EDS clients I have seen would have been enough to ensure their safety and stop me making the same mistakes another therapist had made with one of them in the past which led to her being in pain for two weeks afterwards.

Just as I did as a nurse, if I don’t know about a drug a client takes, I look it up, just to confirm there are not going to be problems with any of the essential oils I use. (If an oils is listed as having a strong effect the same as a drug or an opposite effect, I will avoid using it till I have been able to do some further research. – To date, there have not been any contraindications but some oils I have avoided using till the second appointment.

Above all, I have to acknowledge, I don’t know everything  and I will work with what the client sees as the priority. If I deem the client’s wishes unsafe, I will ask them to confirm with the doctor treating them that their wishes are OK and safe, preferably with an explanation of why my perception is wrong.

If you have one of the many rare conditions, do not accept treatment from a doctor nurse or any complementary practitioner if they do not listen to you  and if what they suggest feels unsafe to you, get a second opinion!