Do you think you or a loved one has EDS?
Here is some important information you might want to read over:
What is EDS?
Ehlers Danlos Syndrome (EDS) is a rare, genetic, connective tissue condition where the collagen in one's body is faulty and loose. Some results of this faulty collagen are joint dislocations/subluxations, joint hypermobility, atrophic scarring, organ prolapse, and stretchy skin. Some people have all of these (and more) symptoms, while others only have a few. No one case is identical to another. It also depends on the type of Ehlers Danlos Syndrome you have. There is more than seven different types of EDS, but the most common type is hEDS- hypermobility type III.
As a result of EDS, most patients develop a condition called POTS/Dysautonomia. Since individuals with EDS have faulty collagen, it causes a disruption of the entire body. One of the places that is most often affected by this disruption is the autonomic nervous system. The autonomic nervous system is the part of the nervous system that controls what your body automatically does (i.g. heart rate, blood pressure, oxygen levels, kidney function, etc.) POTS stands for Postural Orthostatic Tachycardia Syndrome. The symptoms of the condition are presyncope (dizziness)- especially upon standing, slow GI motility, full syncope (passing out), temperature regulation issues, insomnia, heart spikes, low blood pressure, and migraines. There are many other conditions that can be caused by Ehlers Danlos Syndrome, but POTS seems to be the most common one.
As a result of EDS, most patients develop a condition called POTS/Dysautonomia. Since individuals with EDS have faulty collagen, it causes a disruption of the entire body. One of the places that is most often affected by this disruption is the autonomic nervous system. The autonomic nervous system is the part of the nervous system that controls what your body automatically does (i.g. heart rate, blood pressure, oxygen levels, kidney function, etc.) POTS stands for Postural Orthostatic Tachycardia Syndrome. The symptoms of the condition are presyncope (dizziness)- especially upon standing, slow GI motility, full syncope (passing out), temperature regulation issues, insomnia, heart spikes, low blood pressure, and migraines. There are many other conditions that can be caused by Ehlers Danlos Syndrome, but POTS seems to be the most common one.
WHo can diagnose EDS?
Typically, a geneticist who specializes in EDS is your best option. Geneticists should all know what Ehlers Danlos Syndrome is. But unfortunately, most are not educated enough about the condition to properly diagnose it.
Geneticists who specialize in EDS in the USA:
Dr. Francomano, MD, PhD
Dr. Beyers, MD
Dr. Tinkle, MD, PhD
The doctor that diagnosed me was not a geneticist. Sometimes, doctors who specialize in pain and rehabilitation will take special interested in a specific condition. They receive the schooling to be qualified to diagnose it, and they then open their practice. The doctor who diagnosed me is named Dr. Pradeep Chopra. He is extremely compassionate, and I highly recommend him, if you live on the east coast of the US.
Some other doctors who specialize in EDS are:
Dr. Collins, MD - physical medicine and rehab
Dr. Raggio, MD - orthopedics
Dr. Henderson, MD - neurosurgeon
How does EDs affect day-to-day life?
It really depends on the person. There really is no spectrum when it comes to EDS. There could be someone who dislocates their joints hundreds of times per day, but never has any organ issues, and there could also be someone who has zero dislocations, but all of their organs are prolapsing. Obviously, that's pretty severe. But basically what I'm trying to say is, some people can go about their lives with minimal affects, and minimal pain, while others may never be able to hold a job because they're severely disabled.
I know for students who have Ehlers Danlos Syndrome it is especially difficult to deal with simple life tasks. I would recommend that if you're a student, that you get a 504 Plan and/or an IEP. They basically protect your rights as a disabled individual, and allow you to have accommodations that will help you get through the school day. 504 Plans are also able to transfer over when you go to college.
I know for students who have Ehlers Danlos Syndrome it is especially difficult to deal with simple life tasks. I would recommend that if you're a student, that you get a 504 Plan and/or an IEP. They basically protect your rights as a disabled individual, and allow you to have accommodations that will help you get through the school day. 504 Plans are also able to transfer over when you go to college.
Questions/Help
If any of you have questions about anything chronic illness related, feel free to contact me by email or by social media.
Stay Healthy <3
Stay Healthy <3