23 Signs You Grew Up with Ehlers-Danlos Syndrome

Understanding Ehlers-Danlos Syndrome

When you or a loved one is diagnosed with Ehlers-Danlos syndrome (EDS), it can be a confusing time with many questions. The first step in understanding the condition is gaining knowledge about what it is and its various types.

Overview of EDS

Ehlers-Danlos syndrome is an inherited condition that weakens the connective tissues in your body. These tissues are crucial as they provide support to your bones, cartilage, blood, fatty tissue, joints, skin, blood vessels, and organs. If you're struggling with EDS, you might experience symptoms like loose joints, thin skin, easy bruising, and weakened blood vessels.

For more in-depth information on symptoms, you can visit our page on Ehlers-Danlos Syndrome symptoms.

Types and Characteristics

There are 13 identified types of Ehlers-Danlos syndrome, each one presenting unique characteristics, symptoms, and prevalence rates. Check our article for more details on the common subtypes of Ehlers-Danlos Syndrome.

The most common type is hypermobile Ehlers-Danlos syndrome (hEDS), characterized by overly flexible joints and stretchy, fragile skin.

Classical Ehlers-Danlos syndrome (cEDS) is characterized by smooth, extremely stretchy, and fragile skin, joint issues, heart valve problems, and arterial conditions [1].

Vascular Ehlers-Danlos syndrome (vEDS) weakens the blood vessels and increases the risk of organ tears.

The journey ahead may feel daunting, but understanding your condition is the first step towards managing it effectively. As you navigate the signs and symptoms, remember that you're not alone. There are resources and support available to help you through your journey with EDS.

Inheritance Patterns

EDS can be inherited in both dominant and recessive genetic patterns. Dominant genetic disorders occur when a single copy of an abnormal gene is sufficient to cause the disease, while recessive genetic disorders occur when an individual inherits two copies of the abnormal gene for the same trait [3].

For example, if you have hypermobile Ehlers-Danlos syndrome (hEDS), there is a 50% chance you will pass on the gene to each of your children.

Genetic Counseling

Genetic counseling is highly recommended for individuals with a personal or family history of EDS, particularly those who are considering starting a family. This can provide a greater understanding of the inheritance pattern and risks associated with the syndrome.

EDS is a genetic disorder caused by the body's improper production of collagen, leading to weak structures in bones, skin, and organs. While it can be inherited from parents, some cases occur without a family history of the condition.

Understanding the genetic implications of EDS can be a crucial part of your journey to managing the syndrome. If you're experiencing symptoms of EDS, it's important to seek professional medical advice for a proper diagnosis and to discuss potential treatment options.

23 Signs You Grew Up With Ehlers-Danlos Syndrome

Common symptoms of Ehler-Danlos syndrome include hypermobile joints, frequent bruising, and painful joints.

A combination of these signs and symptoms may suggest the presence of Ehler-Danlos syndrome, however it is important to receive a proper and accurate diagnosis from a qualified medical professional.

1. High flexibility of joints
2. Ability to bend fingers or thumb backward
3. Feeling you are double-jointed
4. Frequent joint dislocations, especially of the knee or elbow
5. Increased frequency of fracturing bones
6. Adjusting your pen or pencil grip to avoid pain, discomfort, or dislocating your finger joints.
7. Clumsiness
8. Frequent tripping or falling
9. Hyperextended knees
10. Afraid of relaxing your joints for fear of dislocation
11. Frequent dizzy or fainting spells
12. Fewer wrinkles
13. Frequent foot problems, especially pain and discomfort
14. Growing pain in the ankles
15. Running with a different gait than others
16. Inability to run fast
17. Digestive issues like bloating, diarrhea, nausea, acid reflux
18. Increased likelihood of migraine, vision issues, or postural orthostatic tachycardia syndrome (POTS)
19. Chronic body pain at a young age
20. Extreme fatigue
21. Take longer to complete everyday activities
22. Picky about the clothing you wear to protect your sensitive skin
23. Joints make a clicking or popping noise

Management and Treatment of EDS

Ehler-Danlos syndrome currently has no known cure.

Treatment aims to manage the symptoms and reduce the risk of additional complications. Managing EDS involves a multifaceted approach that combines lifestyle modifications with targeted medical interventions. Given the wide range of symptoms and the different types of EDS, the treatment plan is often personalized to address your specific needs and issues.

Lifestyle Modifications

Lifestyle modifications play a crucial role in managing EDS symptoms. It's important to maintain a balance between physical activity and rest. Regular, gentle exercise can help strengthen your muscles, improve joint stability, and boost cardiovascular health. However, it's also essential to avoid activities with a high risk of injury or those that involve sudden or jarring movements [4].

For example, vEDS, contact sports, heavy lifting, and activities with a high risk of falls, such as skiing or skateboarding, should be avoided due to the potential impact on blood vessels.

If your symptoms include joint hypermobility, physiotherapy may be beneficial. Specific exercises can help to strengthen the muscles around your joints, reducing the risk of dislocations and other injuries. Check out our guide on EDS physical therapy for more information.

Medical Interventions

Medical interventions for EDS are aimed at managing specific symptoms and preventing complications. For instance, if you have skin complications, you may be prescribed creams or ointments to improve skin elasticity and reduce discomfort.

Pain management is a critical aspect of treating EDS. Your doctor might recommend over-the-counter pain relievers or prescribe stronger medications if needed. However, it's important to be aware of medications to avoid with EDS, as some drugs can exacerbate symptoms or cause adverse reactions.

In severe cases, or when lifestyle modifications and medications aren't effective, surgical interventions may be considered. These could include joint replacements or surgeries to repair damaged blood vessels or organs. It's crucial to discuss these options thoroughly with your healthcare provider to understand the potential risks and benefits.

Remember, the goal of treatment isn't just to manage the symptoms of EDS, but also to improve your quality of life. By working closely with your healthcare team and making necessary lifestyle modifications, you can better manage your symptoms and lead a fulfilling life. To explore more treatment options, visit our article on EDS treatments.