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Being your own advocate - hypermobile Ehlers-Danlos syndrome

Being your own advocate

When dealing with a condition that is so poorly understood by so many,  the need to be an advocate for yourself, or you child / loved one, becomes even more necessary. 


Jonathan  Rodis, President of EDS Massachusetts  and New England Support Group and Chapter of the National Marfan Foundation, offers his advice:


'Being your own advocate can not only improve the quality of your care in the future, but also provide your local caregivers/hospitals a clearer understanding of what your disorder/condition is and make it a little easier for the next rare disorder patient through their door.


One of the first ways I began to advocate for myself was to pull together information on my condition(S) that were written by doctors/specialists/researchers working with and caring for these disorders.


The next step was to compile a complete outline of my health issues/diagnosis, etc in an outline form using my complete medical records. (which I strongly recommend having your medical records on a disc or flash drive) I basically took my medical records and made a trimmed down-chronological list. The outline format is easy to read and doctors can get a very clear picture of my medical history and my status. Once completed, your outline can be put onto a flash drive or disc for you to give to future doctors or if you are traveling and god forbid, have to go to an ER (A&E).


Being an advocate for myself also required me to be firm with my medical dealings but always be respectful and keep calm.  It is indeed easier to get what you want with sugar than it is with vinegar.


Another big piece to being your own advocate, is to seek out doctors who are willing to be supportive of your needs.  It would be great to have a local doctor who was experienced in your condition but if they  are not and they are wiling to learn and help you, it is an important step.  These are the doctors that you want to provide with the research and Information specific to how you are affected. Also, it is wise to have them utilise the national experts in the specialty being reviewed.


In the ER [A&E in the UK], being your own advocate can be difficult since you are in bad shape. This is where you need to be very specific as to what is going on - what key information they should know in an ER setting - be respectful but firm in taking the right steps.  It also helps to have someone advocate for you as well who understands your condition.  They must know the short list of what to do and what not to do.  This preparation is very important.'



Author: Jonathan Rodis President-Massachusetts Head of EDS Massachusetts  and New England Support Group and Chapter of the National Marfan Foundation - See more at:


In her article ‘You are not alone’ 2010, Patricia McGill Smith goes on to add:


'Do Not Be Intimidated .  Many parents feel inadequate in the presence of people from the medical or educational professions because of their credentials and, sometimes, because of their professional manner. Do not be intimidated by the educational backgrounds of these and other personnel who may be involved in treating or helping your child. You do not have to apologise for wanting to know what is occurring. Do not be concerned that you are being a bother or are asking too many questions. Remember, this is your child, and the situation has a profound effect on your life and on your child's future. Therefore, it is important that you learn as much as you can about your situation.


Learn the Terminology.   When you are introduced to a new terminology, you should not be hesitant to ask what it means. Whenever someone uses a word that you don't understand, stop the conversation for a minute and ask the person to explain the word.'



Being your own advocate in an important step, not only in raising the quality of care of your condition, but also in raising awareness within the medical community and the world around you.  Being an advocate for your condition, yourself, or your child, not only helps you, it also makes the journey easier for those who follow behind you and that can only be a positive thing. 


References:  For references and information sources used within this site, please see 'References' page, under 'Resources and Links' on the main menu.


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