Which advice would you give to someone who has just been diagnosed with Ehlers Danlos?

See some advice from people with experience in Ehlers Danlos to people who have just been diagnosed with Ehlers Danlos

Congratulations on taking the first step towards understanding your health better!

Being diagnosed with Ehlers Danlos Syndrome (EDS) can be overwhelming and confusing. It's important to remember that you are not alone in this journey. Here are some pieces of advice to help you navigate life with EDS:

1. Educate Yourself:

Take the time to learn about EDS and understand how it affects your body. Knowledge is power, and by understanding the condition, you can better manage your symptoms and make informed decisions about your health. Consult reputable sources, medical professionals, and connect with support groups or online communities to gain insights from others who have EDS.

2. Build a Support Network:

Reach out to friends, family, and loved ones for support. Explain your condition to them, so they can better understand your needs and limitations. Having a strong support network can provide emotional support, help with daily tasks, and offer a sense of belonging.

3. Find a Knowledgeable Healthcare Team:

Seek out healthcare professionals who are familiar with EDS or connective tissue disorders. They can provide specialized care, offer appropriate treatment options, and guide you through managing your symptoms. Building a team of doctors, physical therapists, and specialists who understand EDS is crucial for your well-being.

4. Listen to Your Body:

Pay attention to your body's signals and learn to recognize your limits. EDS can cause chronic pain, fatigue, and other symptoms that vary from person to person. It's important to pace yourself, rest when needed, and avoid overexertion. Pushing through pain or ignoring warning signs can lead to further complications.

5. Develop a Self-Care Routine:

Self-care is essential for managing EDS. Establish a routine that includes gentle exercises, stretching, and relaxation techniques. Physical therapy can be beneficial in strengthening muscles, improving joint stability, and managing pain. Additionally, prioritize good sleep, eat a balanced diet, and manage stress levels to support your overall well-being.

6. Advocate for Yourself:

Be your own advocate and actively participate in your healthcare. Keep a symptom diary, track your pain levels, and note any changes in your condition. This information can help your healthcare team make informed decisions about your treatment plan. Don't hesitate to ask questions, seek second opinions, or voice concerns about your care.

7. Connect with the EDS Community:

Joining support groups or online communities can provide a sense of belonging and understanding. Interacting with others who have EDS can offer valuable insights, tips, and emotional support. Sharing experiences and learning from each other can be empowering and help you navigate the challenges of living with EDS.

8. Take Steps to Prevent Injury:

EDS can make you more prone to injuries, dislocations, and subluxations. Take precautions to protect your joints, such as using braces or assistive devices when necessary. Work with your healthcare team to develop strategies for injury prevention and learn proper body mechanics to minimize strain on your joints.

9. Stay Positive and Seek Mental Health Support:

Living with a chronic condition like EDS can be emotionally challenging. It's important to prioritize your mental health and seek support when needed. Consider therapy or counseling to help you cope with the emotional aspects of your diagnosis. Surround yourself with positivity, engage in activities you enjoy, and celebrate small victories along the way.

10. Be Patient and Kind to Yourself:

Remember that living with EDS is a lifelong journey. There will be good days and bad days, and it's important to be patient with yourself. Practice self-compassion, celebrate your strengths, and acknowledge that it's okay to ask for help when needed. Focus on what you can do rather than what you can't, and embrace your unique journey.

Remember, this advice is not a substitute for professional medical guidance. Always consult with your healthcare team for personalized advice and treatment options.

You've got this! With the right support, self-care, and knowledge, you can lead a fulfilling life despite the challenges of EDS.

Diseasemaps

Posted Apr 11, 2017 by Montana 1670

Find the best specialists you can. Look for people who have experience with treating EDS.
Get accommodations for school or work. Special pens and pencils, a better chair, 504 plans, etc. can all be very helpful.
Don't be afraid to use assistive devices and mobility aids that you need.
If your friends are not supportive or understanding, try explaining how EDS affects you and answer their questions. If they still aren't supportive or understanding, and they aren't trying to be, dump them. It hurts but you'll be better off. You deserve friends who are supportive and understanding and kind.

Posted May 10, 2017 by stairphobe 3070

Do as much research as you can. Go to as many doctors as you can and try to find a doctor who knows about EDS. Someone who really knows. Not a doctor that asks you what EDS is.
Don't be afraid to try new things, such as k-tape, braces. Try things that might help you. Each case is different, each person is different. Since there isn't much information yet about EDS, and since there are so many different types and collagen can affect us differently, don't be afraid to try braces or whatever to make you feel better.

Posted May 25, 2017 by Maria 2051

Write everything down.
If you suffer from widespread issues write down each issue. It makes it easier to deal with each problem. You can also ensure you see the right person.
At appointments take notes som you don't forget things to. You can be given a huge amount of info at adornments which can be easily forgot when you walk out the door.
Most importantly you are not alone, they're are thousands of others who were in you pave once and we're happy to listen

Posted May 27, 2017 by Jude 2050

Form a team of doctors and therapists willing to learn about the disorder and help you in anyway they can.

Posted May 27, 2017 by Ashley 950

Study! !You WILL need to advocate for yourself because most of the time you will know more about eds than your doctors! Keep seeing different doctors until you find one willing to search for answers with you. You'll go through many but don't give up

Posted May 28, 2017 by Celi 2000

If the doctor you're seeing isn't willing to go to the ends of the earth to help you (and by help, I mean do more than pile you up with addictive pills because that is tragically VERY common), get a new doctor.

Posted May 31, 2017 by KathrynOConnor 2200

Be careful, don't do party tricks, and stay safe.

Posted Sep 27, 2017 by Lbond94 4100

Take it slow and if Drs try to tell you it's in your head find a new Dr who will listen

Posted Oct 6, 2017 by Sasha 2050

Read about it, ask questions, do your psyhio but dont let it get you down

Posted Oct 7, 2017 by Sharon 7050

To LIVE, do the things you enjoy while you can, you may not be able to later! Don't think of EDS as a death sentence, think of it as a reason to explore the world and not procrastinate. DON"T be reckless, DO be kind, to both yourself and others. What would I have done differently?, I wouldn't have been such a perfectionist and I would have been less judgmental towards others. Also, I wouldn't have been as demanding on my body physically, wouldn't have pushed so hard and maybe could have avoided several injuries.

Posted Oct 25, 2017 by Dolores 3050

It can be hard and you will have to limit your activity but make sure you have high sodium and don’t purposely contort and ask how to relocate your own joints and no party tricks and you are special

Posted Sep 29, 2019 by Amy 13500

The Ehlers-Danlos Society members are sharing information online and learning from each other in ways that were impossible not very long ago. Visit The Ehlers-Danlos Society’s Facebook page, The Ehlers-Danlos Society Inspire Online Community, or look through the Resource Guides.

Visit the Ehlers-Danlos Society’s website at ehlers-danlos.com

Posted Mar 11, 2020 by MegTheMariner 1870

Research about your condition, take care of your joints, and find a community of people who understand and who you can ask questions.

Posted May 12, 2020 by Alex 3551

To stick with the doctor that diagnosed you cuz apparently they understand and know what is going on follow their advice

Posted Nov 19, 2021 by NuNu 2550

Translated from spanish Improve translation

Investigate and infirmarse on the Ehlers Danlos syndrome and become and become experts in the subject, I'm them can be life-saving since most of the doctors don't know much about the topic

Posted Mar 25, 2017 by Paula Lopez 1151

Translated from french Improve translation

Talk about it,
After the diagnosis, many questions arise, of the word group or groups facebook can help.
Some need a moment to mourn the life that they had dream to be able to build a new one.
The diagnosis is not the end of your life but the beginning of your support.

Posted Aug 16, 2017 by Apolline 1205

Translated from french Improve translation

Get in touch with an association or a word group (there are plenty on fb). Talk, ask questions of other patients will help you greatly.

Posted Aug 17, 2017 by Sandrine 1790

Translated from french Improve translation

A person who has been diagnosed with sed goes through several stages. Denial (because everything has always been so) , the anger, the sadness, the sense of injustice, and the long acceptance of the disease. It is a disability which is invisible and some doctors have probably told that it was psychosomatic. Everything collapses. But it is over and we are fighting. You have it always in you and you are still here and for a long time. The name of this disease and its symptoms are not well known but it will change. Stay close to your family and friends and don't make the mistake of thinking that you can handle it alone(e) , because this is not the case. The sed is pervasive, takes your energy but your good humor, your generosity, your smile are the best weapons against it. Some days will be very hard to not be able to get out of bed or hardly... but you say that you are more qualified to talk about the sed that all of the doctors who you have said that it was in your head and all those who will tell you "the air in the bone ?" And that day, you will understand that the sed will not change what you have always been. The equipment will help you, the medication also and you will get there because so far, you have done it.

Posted Aug 30, 2017 by Ehos 1050

Translated from portuguese Improve translation

Aconcelhar to seek from an early family joveis have is syndrome. Because if it is better to find out when new.

Posted Aug 30, 2017 by Kayla Rarine 2000