8 Simple Tips for People Newly Diagnosed with Ehlers-Danlos Syndrome
Once you are diagnosed with Ehlers-Danlos Syndrome, it can be an overwhelming process to find supportive medical care and learn ways to live life more efficiently and safely. Here are a few pointers to get you started.
Ehlers-Danlos Syndrome (EDS) is a condition that causes one to be born with deformed connective tissue, the “glue” that holds the body together. There isn’t a cure to correct this problem, so living life with this condition means accepting many aspects of your body that may be different than others. But it doesn’t mean you have to live your life with constant pain. There are simple things you can learn to live your life with EDS more safely. For instance, learning how to properly strengthen the muscles that are on overload can help you reduce or eliminate your pain and live your life to the fullest.
Living with Ehlers-Danlos Syndrome means, at times, a long, lonely and difficult journey burdened with a constant search for direction on how to try to create something resembling a normal life. We at Actify know what it’s like to go down this journey and want you to know that you’re not alone.
With that in mind, here are some suggestions to the newly diagnosed, in hopes that your journey will begin safely by addressing these issues:
1) Confirm with a knowledgeable geneticist that you have EDS. If you get the feeling they do not understand or believe you have EDS, then go to another geneticist. It’s not uncommon for patients to meet with two or three before accepting the diagnosis.
2) Mourn your losses. It’s okay and necessary to allow yourself to mourn the loss of your past life — it will never again be exactly as you have known it. As you go through that process, remember you need to reach the goal of moving on and there are people out there who are here to help you.
3) Address pain control. Accept that you cannot take this journey on your own. You need to address your pain to have a chance of living as normal a life as you can. You might be like many of us and have trouble metabolizing certain medications. In that case, DNA drug sensitivity testing would help you to identify a compatible pain medication. There are several daily exercises that you can do that will help manage your pain, but you must have a knowledgeable physical therapist teach you how to do these safely.
4) Be evaluated by a neurologist for common EDS conditions such as tethered cord, Chiari I Malformation, and instability of the neck . This is a very important. Every patient should have this evaluation and have a neurologist monitor you. Many of us need to have the tethered cord released to end issues with the bladder, kidneys, pressure in the chest, and issues with legs. If you test positive, get it done and then you will feel so much better and be able to progress onto physical therapy more successfully.
Instability of the neck will cause havoc with your body if strengthening does not succeed. Chiari I Malformation must also be addressed. Any or all of these may be an issue for you in time, but please know that correcting them when the time is right will make the difference in moving forward again.
5) Find a good manual physical therapist. This is your chance to take better control of your life by learning, through the guidance of a manual therapist. The trick is finding the right physical therapist. The sad reality is most physical therapists don’t understand EDS inside and out. They don’t know how much pushing is “okay” and when it’s more important to hold back. Here at Actify all of our physical therapists are extensively trained by our founder, Dr. Marcia Perretto (who has EDS herself) on correct treatment methods for our several EDS patients. You deserve a doctor who will fight for you and protect you while you’re taking back your life. You’ll also need to stay loyal to your daily workouts and make a commitment to your plan of care.
6) Develop a network of doctors that understand EDS or are willing get educated. Remember, we are complicated and never get all better. That is a lot for a doctor to want to take on. Be patient and look for compatible personalities and let them learn through you. Better yet, find someone like Dr. Perretto who has not only experienced this herself, but has dedicated her career to those with EDS.
7) Be sure to have a cardiologist. You should have an echocardiogram (echo test) done yearly. The test uses sound waves to produce images of the heart and allows the cardiologist to see if your heart is beating and pumping blood correctly.
8) Determine drug and food allergies. A simple DNA drug sensitivity test can help you find a safe drug to be able to put into your body. The same goes for food sensitivity testing. You will learn what foods are causing issues or what drugs are not metabolizing.
Both these issues are VERY important to address. If you keep taking medication or eating foods that are not compatible to your body, then you are adding to the inflammation in your system. More inflammation means more pain due to the increase of subluxations.
It’s also important to remember that you are not alone. Find a local EDS support group and learn as much as you can to live more safely with this condition. We are beginning to host a weekly EDS support group at Actify! If you’re in the Boca Raton area, or would like to call in from afar, simply email email@example.com and we will get you on the list. You’re not alone, you deserve to live a life free from pain, and we at Actify are here to help.