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The emotional toll of living with Ehlers-Danlos Syndrome is well-documented. Patients with this hereditary connective tissue disorder experience a range of symptoms and experiences, including anxiety, depression, and poor self-esteem.
The 2017 International Classification of Ehlers-Danlos Syndromes recategorized the condition into 13 types based on vital physical characteristics and affected tissues. In addition, patients with this hereditary connective tissue disorder can also develop chronic pain.
Talk to a Psychiatrist
Ehlers-Danlos syndrome is a group of genetic disorders that affect connective tissues. These connective tissues support skin, bones, tendons, blood vessels and other organs. They are made up of proteins called collagen. People with Ehlers-Danlos syndrome have a faulty gene that causes their collagen to be weaker than usual.
Most people with this disorder have a mild form of the condition. However, some of the rarer types can be disabling or life-threatening.
Because of the weakness and fragility of the connective tissue in people with EDS, some conditions can cause joint instability or vascular problems. These problems can be severe and can lead to heart attacks or strokes.
Fortunately, there are many ways to cope with the emotional toll of Ehlers-Danlos Syndrome and find help for your symptoms. One of the most important is to talk to a psychiatrist or other mental healthcare professional about your symptoms and feelings.
Get a Support Group
If you have a chronic condition like Ehlers-Danlos Syndrome, it can be helpful to find a support group. These groups, like The Mighty may be online or in person and are a place to discuss their health conditions and share resources.
A support network can help you cope with stress and anxiety, which can be difficult when living with Ehlers-Danlos Syndrome. You can find support through various sources, such as family, friends, and co-workers.
Finding a support group can also be a great way to make new friends. A supportive group can help you share your experiences and gain a sense of belonging.
A support group can also be valuable for raising awareness of Ehlers-Danlos Syndrome in your community. They can also raise funds for research and projects that benefit the Ehlers-Danlos Syndrome community.
The best part about a support group is that it can be free. You can find local groups by searching on social media or talking to your healthcare team.
Take a Break
Pain is often a significant issue for people with Ehlers-Danlos Syndrome (EDS). It may be caused by the stiffness of your skin or the instability of your joints.
Your doctor will prescribe medications and other therapies to reduce your pain. These can include ibuprofen, muscle relaxers, and nerve pain medication to blunt your pain response.
Your doctor may also recommend exercises to strengthen your muscles and stabilize your joints. These exercises can help prevent joint dislocations, common in people with Ehlers-Danlos Syndrome.
It can be helpful to build a support system of friends and family who are positive and caring. Talking to a counselor or clergy member may also be beneficial.
Taking time to relax is also a good idea. It can help you to decompress and focus on the positive aspects of your life.
Regular checkups with your doctor and keeping your blood pressure low are essential. This can help to lessen the stress on your blood vessels and prevent blood clots.
Change Your Mindset
A positive mindset is critical to coping with Ehlers-Danlos Syndrome. It’s a powerful way to change your attitude, increase your confidence and drive, and ultimately reach your goals.
Mindsets are based on your beliefs, values and attitudes about yourself, the world around you and your life. They determine how you respond to challenges and opportunities in your life. Stanford psychologist Carol Dweck has found that your mindset is a strong predictor of your success in the future.
The benefits of changing your mindset include reducing stress and anxiety, improving relationships and increasing happiness. Changing your mindset also makes it easier to live a healthy lifestyle.
Some people find it hard to change their mindset, but you can do it if you are committed to making the changes. You may need to work with a therapist or other mental health professional to get started.
The speed at which your mindset can change depends on a few factors, including your current situation and the habits you build from your new outlook. Generally, it can take a few weeks to months for your mindset to shift.
Get a Massage
Ehlers-Danlos Syndrome is a genetic condition that affects the connective tissue that supports muscles, organs and blood vessels. People with EDS have a defect in collagen (proteins that add flexibility and strength to tissues), which causes the connective tissue to break down more quickly.
This can lead to various problems, including muscle spasticity, joint instability and chronic pain. For these reasons, EDS patients often seek out physical therapy to help them develop new ways to move and strengthen their joints.
Some EDS patients also use massage therapy to ease the symptoms of their condition. This therapy helps to reduce muscle tension and increase feel-good hormones in the body, which can alleviate stress.
Getting a massage can also be helpful for people who suffer from other emotional disabilities, such as anxiety or sleep problems. It can help to reduce cortisol in the body, which can cause stress, and it can also increase the production of feel-good hormones in the body, reducing anxiety.
Increasing awareness among medical professionals about Ehlers-Danlos Syndromes can help improve pain management in these patients. Several studies have found that patients with this disorder are misunderstood and undertreated due to a lack of knowledge.
