Question
I have a 6 year old just dx with this. How serious is it and what do I need to know. How bad will this get for her? She has flat feet, hyperflex of every joint, congenital cholesteatoma, surgery for stapedectomy, muscle and joint pain over 15-20 days and nights a month. She has super sensitive allergic skin and many allergies to foods. On top of this she has ADHD and takes Ritilyn. Thank you in advance for your help!!!
Lisa

Answer
Lisa,

First, I must preface my answer by saying I am not a doctor and cannot give medical advice.  

Your question is impossible to really answer because there are too many factors that will play a part in determining how serious EDS will be for your daughter.  

First and foremost, you need to know what type of EDS you are dealing with.  Does she have Vascular EDS (diagnosed with a skin biopsy) or one of the 5-6 other types that are usually less severe.  If she hasn't been "typed" yet, that should be your first step.  You can work with a geneticist to have this done.  Each type of EDS is confirmed with different tests - skin biopsy, urine culture, family history and clinical observation are all part of determining what type of EDS is involved.  Once you know what type, you can learn about the specific risks and symptoms you can likely expect to deal with.

Second, once you have a type, you can arm yourself with information about lifestyle choices that can reduce the risk of serious injury or complications and treatment options for various injuries.  For example, if your child is Hypermobile type, you wouldn't want them involved in ballet or gymnastics.  A child with Classical type might need to have care plans in place at school for skin injuries.  Children with EDS shouldn't participate in heavy contact sports like tackle football.  Using adaptive equipment, physical therapy, massage therapy, pain management tools, bracing and support devices, surgical intervention etc. can also influence how well your child copes with the various potential issues that might develop.

Finally, there is an element of pure "luck" involved.  Some people will be more or less severely impacted by EDS than others, even within the same type.  I've known people with EDS who are severely impacted and others with the same type who are impacted so mildly that you wouldn't even know they had it.  

For example, I know a family in which all 4 siblings have some degree of EDS, but the severity is vastly different in each sibling.  One was significantly impacted while another was told by a leading expert in EDS that he didn't have EDS at all.  He would believe he doesn't have it, except that his children exhibit symptoms and since it doesn't skip generations, he has to have a very mild case of EDS to have passed it on.  In another family, EDS is present in multiple generations and lines of the family (cousins, aunts, uncles etc.)  The grand-daughter was diagnosed, which lead to the father being diagnosed.  In looking at the rest of the family, there is evidence that others in the same genetic line have mild EDS, but it was never severe enough to seek a diagnosis.  

The main problem with EDS is that it is so complex and involves so many parts of the body, that it doesn't follow a "disease process".  Unlike other conditions that have a clearly defined path, EDS is unpredictable.  Some disorders you can get a brochure from your doctor that says, "so, you have X.  Now what?  In the first 6 months you will experience *symptom.*  Over time, *symptom* progresses to become *worse symptom* leading to eventual *outcome*.  Treatment options include: A, B, and C, with the following rates of effectiveness...."  This simply doesn't exist with EDS.  The same brochure with EDS would include a list of symptoms several pages long and tell you that you might experience any, all or few of the above and the severity of each symptom could range from mild to severe.

So, you started off wondering what to expect and I've probably just thrown you for a loop and left you more confused than before.  There is hope!  The Internet is here to save the day.  When I was diagnosed 17 years ago, the only resource was one paragraph in a book at the library and the Ehlers-Danlos National Foundation (www.ednf.org).  Thanks to the Internet, there are oodles of online support groups on Yahoogroups, Facebook, Twitter, Meet-up etc.  Some are better than others.  One of the most popular is the CEDA (Canadian Ehlers Danlos Association) group on Yahoogroups.  Go to http://www.Yahoogroups.com and search for CEDA.   There are other groups specifically for parents of kids with EDS.  

There are also 3 EDS organizations in the USA alone - EDNF, EDS Today, and EDS Network CARES.  Each organization has a different purpose and focus.  EDNF has an annual learning conference in the summer where you can meet other people with EDS and learn from various speakers.  EDS Today published a bi-annual newsletter on various EDS topics - I was the editor for the first decade.  EDS Network Cares is new on the scene and they are working on funding vital research on EDS.

The best things you can do are to learn everything you can, get involved with the online EDS community and the non-profit groups, and then step back and let your daughter teach you.  People with EDS are always adapting.  She will eventually help you understand her limitations and abilities better than any doctor.

Good luck.