Living with Ehlers Danlos. How to live with Ehlers Danlos?

Can you be happy living with Ehlers Danlos? What do you have to do to be happy with Ehlers Danlos? Living with Ehlers Danlos can be difficult, but you have to fight to try to be happy. Have a look at things that other people have done to be happy with Ehlers Danlos

Living with Ehlers Danlos

Ehlers Danlos Syndrome (EDS) is a group of genetic disorders that affect the connective tissues in the body. Living with EDS can present various challenges, but with proper management and support, individuals with EDS can lead fulfilling lives. Here are some strategies and tips for living with Ehlers Danlos:

1. Educate Yourself

Understanding your condition is crucial for managing EDS effectively. Educate yourself about the different types of EDS, their symptoms, and potential complications. Consult reputable medical sources, connect with support groups, and seek guidance from healthcare professionals who specialize in EDS.

2. Build a Support Network

Living with EDS can be physically and emotionally challenging. Surround yourself with a strong support network of family, friends, and healthcare professionals who understand your condition and can provide the necessary support and encouragement.

3. Find a Knowledgeable Healthcare Team

Seek out healthcare professionals who have experience and knowledge in managing EDS. This may include geneticists, rheumatologists, physiotherapists, and pain specialists. Collaborate with your healthcare team to develop a comprehensive treatment plan tailored to your specific needs.

4. Manage Pain and Fatigue

Pain and fatigue are common symptoms of EDS. Develop strategies to manage and cope with these symptoms. This may involve a combination of medication, physical therapy, relaxation techniques, and pacing activities to conserve energy. Work closely with your healthcare team to find the most effective pain management strategies for you.

5. Exercise and Physical Therapy

Engaging in regular exercise and physical therapy can help strengthen muscles, improve joint stability, and enhance overall physical function. However, it is important to work with a knowledgeable physical therapist who understands the unique challenges of EDS and can design an exercise program that is safe and appropriate for your condition.

6. Joint Protection

Protecting your joints is crucial when living with EDS. Avoid activities that put excessive strain on your joints and practice proper body mechanics. Use assistive devices such as braces, splints, or mobility aids when necessary to provide additional support and stability.

7. Manage Stress

Stress can exacerbate symptoms of EDS. Find healthy ways to manage stress, such as practicing relaxation techniques, engaging in hobbies, or seeking support from a therapist or counselor. Prioritize self-care and make time for activities that bring you joy and relaxation.

8. Adapt Your Environment

Make modifications to your environment to accommodate your specific needs. This may include using ergonomic furniture, installing grab bars or handrails, and creating a clutter-free space to minimize the risk of falls or injuries.

9. Connect with Support Groups

Joining support groups or online communities can provide a sense of belonging and understanding. Connecting with others who share similar experiences can offer emotional support, practical advice, and a platform to share coping strategies.

10. Advocate for Yourself

Be your own advocate and actively participate in your healthcare decisions. Communicate openly with your healthcare team, ask questions, and express your concerns. Stay informed about the latest research and treatment options for EDS.

Living with Ehlers Danlos can be challenging, but with the right support, self-care strategies, and medical management, individuals with EDS can lead fulfilling lives. Remember to consult with healthcare professionals for personalized advice and guidance.

Diseasemaps

Posted Apr 11, 2017 by Montana 1670

Lots of people are happy while living with EDS, myself included! I've found the best thing to do is to accept EDS as a part of your life that will never go away, as an unchangeable fact. I also look for the good in having EDS: I love my soft, smooth skin, for example. Another thing that has helped me is practicing radical body positivity. My body is all kinds of messed up, but I've learned to love it anyway. Keep in mind that it's ok to have negative thoughts about your EDS. It's ok to struggle sometimes. There are times where I appreciate having EDS. Knowing that I'll always have it can be weirdly comforting for me during times of major change because at least there's one constant in my life.
It's taken a few years of work to get to this point. I used to be very depressed about my EDS and feel a lot of anger and hatred towards it. Be patient.

Posted May 10, 2017 by stairphobe 3070

Oh man, this is hard. I am in constant pain since I was 15 years old. That's almost 7 years with pain. But am I happy? I think so. But that has nothing to do with EDS. I am happy despite EDS. Although I must say, there are days when I am in so much pain and despair that in those days I don't consider myself that happy. Pain is here with me everyday. Constant pain. Not easy, man.

I don't have any advice. The worst thing someone can tell me is "at least is not cancer". I'm not saying that I have cancer, or that EDS is worst than cancer but how can they even compare?

Posted May 25, 2017 by Maria 2051

You can be happy and live an amazing life. That's all in perspective.

Posted May 26, 2017 by Stephanie 800

I lead an ok life. The support network out there for eds suffers is huge.

Posted May 27, 2017 by Jude 2050

Listen to your body if it's tired rest and take a break. Learn what your limits are. Stay in touch with your friends and join a support group if you can.

Posted May 27, 2017 by Ashley 950

This depends on the level of damage and pain. So can exercise carefully and some can't at all

Posted May 28, 2017 by Celi 2000

Yes, but the let downs associated with pain, awful doctors, isolation, impatient people, etc ARE a challenge. I sense you're already experiencing some depression given the question. Please talk to someone, even if you're unsure. Medication is safe and can work wonders. Depression makes you hurt and pain makes you depressed. Seeking help can improve both and open the doors to a "normal" life.

Posted May 31, 2017 by KathrynOConnor 2200

Depending on your family support you can have a very happy life.

Posted Sep 27, 2017 by Lbond94 4100

I'm married and happy and even though my eds has gotten worse I'm still happy

Posted Oct 6, 2017 by Sasha 2050

Remember your a zebra and smile at being different ro a horse

Posted Oct 7, 2017 by Sharon 7050

Discovering I have EDS has been helpful in understanding life long, unexplained, conditions such as Major Depressive Disorder, Obsessive Compulsive Behavior, hyper mobility, fragile skin, periodontal disease, TMJ/Migrains, digestive problems etc. Now that I have an answer or explanation for these conditions I'm addressing them from an educated standpoint-I'm not crazy, lazy or a hypochondriac! Happy? I admit that's a tough one, I'll go as far as saying that I try to enjoy special moments of happiness in between the pain and frustration of having Ehlers Danlos.

Posted Oct 25, 2017 by Dolores 3050

Learn how to live with the pain which can be hard

Posted Sep 29, 2019 by Amy 13500

Take care of your joints, and don't overwork them.

Posted May 12, 2020 by Alex 3551

Depends on which type you have if you have vascular ehlers-danlos syndrome your lifespan will be shortened usually to about 47 years of age otherwise the others usually have a normal life span depending on other conditions that you may have with either danlos syndrome

Posted Nov 19, 2021 by NuNu 2550

Translated from spanish Improve translation

You can Be happy with Ehlers Danlos syndrome, admittedly, there exists the disease, to accept that we suffer, to bless our body and our being and to love our body and love this hard conndición of life with which we were born

Posted Mar 25, 2017 by Paula Lopez 1151

Translated from french Improve translation

Although pain is an important part of everyday life it is quite possible to be happy, it is necessary to surround yourself with people who support us and understand us. Learn to take time for yourself and to learn not to love is also important, meditation can be a good way of achieving this.

Posted Aug 16, 2017 by Apolline 1205

Translated from french Improve translation

It is important not to get discouraged. A day is not the other with the SED. It may be that it is nailed to the bed one day and shape the next day. Even if it is difficult to project long-term activities, the disease if the treatment is well adapted, and that the pains are more or less under control, can still keep a social life. It is necessary, however, often pass by the acceptance of his own limitations and especially to take into account not to immerse in crisis. Splints support really make it possible to limit sprains and dislocations. Having a wheelchair allows you to be able to continue to make longer excursions.

Posted Aug 17, 2017 by Sandrine 1790

Translated from french Improve translation

The sed changed life. Of the patient and his entourage. Living with sed is to make sacrifices, know when to listen, and listen to his body when he says "stop". It is accept help from family or friends and know how to rest.
It is setting up your home to avoid unnecessary moves and tiring. And that is to challenge themselves and to accept being sick.
The concept of being happy is unique to each. Some will look, others will flee from him: by denial or by fear or shame of the sed. A sed can be happy. It is a journey for life

Posted Aug 30, 2017 by Ehos 1050

Translated from portuguese Improve translation

Have to drop the sheet that has a sindorme and seek all kinds of help and information as possible.
Both asking for doctors or counselors as well as in books and internet articles.

Posted Aug 30, 2017 by Kayla Rarine 2000