Living with Ehlers-Danlos Syndrome can be really difficult. I know this from personal experience. Every day it’s a new battle with extreme pain, instability and defeat. Though the pain is unbearable, I must say that the most troubling thing I’ve experience since my symptoms started was how long it took to get a diagnosis. It took two years to be exact! How is that even possible? Can’t we do better?
My goal of this article is to educate you on Ehlers-Danlos Syndrome. The hope is that if you are experiencing any symptoms or know of someone who is, this article can be a source of validation and guidance for you or them. In this article, I will explain what Ehlers-Danlos Syndrome is, the symptoms of it, and ways you can support yourself or someone you know who is dealing with this condition.
What is Ehlers-Danlos Syndrome?
To begin, let’s discuss what Ehlers-Danlos Syndrome is. Ehlers-Danlos Syndrome, also known as EDS, is a rare genetic disorder that affects the body’s connective tissues, primarily collagen. Collagen is a protein that provides strength and elasticity to various structures in the body, such as the skin, joints, blood vessels, and organs. When collagen is disrupted, so is skin, joints, blood vessels and organs. Ehlers-Danlos can manifest in different ways, depending on the specific subtype, and can range from mild to severe.
Ehlers-Danlos Syndrome Types
Now that we know what EDS is, let’s go into the different types. There are several types of EDS, each with it’s own distinct features and inheritance patterns. The most common types of Ehlers-Danlos Syndrome include:
- Hyper-mobility EDS (hEDS): This is the most common type, characterized by joint hyper-mobility, chronic pain, and fatigue.
- Classical EDS (cEDS): This type is characterized by skin hyper-extensibility, joint hyper-mobility, and increased risk of joint dislocations.
- Vascular EDS (vEDS): This is the most severe and potentially life-threatening type, with fragile blood vessels and an increased risk of organ rupture.
- Kyphoscoliotic EDS (kEDS): This type is characterized by severe muscle weakness, scoliosis, and joint hyper mobility.
Ehler-Danlos Syndrome Symptoms
Now that you know the most common forms of Ehlers-Danlos, let’s explore the symptoms. Because there are many different forms of EDS, the signs and symptoms can vary widely depending on the type and severity of the condition. The most common symptoms of EDS include:
- Joint hyper-mobility: Joints that move beyond the normal range of motion.
- Joint instability: Frequent dislocations or subluxations.
- Stretchy or fragile skin: Skin that is easily bruised, tears easily, or is excessively elastic.
- Chronic pain: Persistent and often debilitating pain, especially in the joints and muscles.
- Fatigue: Feeling tired or exhausted, even after adequate rest.
- Gastrointestinal issues: Digestive problems such as reflux, constipation, or irritable bowel syndrome.
- Cardiovascular issues: Weak or faulty blood vessels, leading to low blood pressure or heart problems.
The Importance of Awareness
In my opinion, more awareness of EDS is necessary. As I have already explained, it took me two years to get diagnosed, which means there was a two year delay in my treatment. Increased awareness can lead to earlier diagnosis and appropriate management of symptoms, improving the quality of life for individuals with EDS.
Moreover, awareness helps to combat misconceptions and stigma surrounding invisible illnesses. By understanding EDS, we can foster a more inclusive and supportive society for those living with chronic pain and invisible disabilities.
Ehlers-Danlos Syndrome Advocacy
If you believe that you might be experiencing symptoms of Ehlers-Danlos Syndrome, it’s important to be proactive in advocating for your health and seeking a thorough medical assessment. Taking the following steps can help you in this process:
1. Educate Yourself
Start by educating yourself about EDS and its different subtypes. You’re already off to a great start by reading this article! By taking the time to understand your specific symptoms, triggers, and treatment options, you are equipping yourself with valuable knowledge that will help you to communicate with healthcare professionals. It will also help you to make informed decisions about your healthcare. Remember, knowledge is power! The more you know about your condition, the better prepared you’ll be to navigate your healthcare journey.
2. Find a Specialist
Now, let’s talk about finding a specialist. Where should you even start? Who treats Ehlers-Danlos Syndrome? So many questions! I know I had all the questions too and no answers. Start by finding a healthcare professionals who has a good understanding of EDS and how to manage it. Not all healthcare providers are familiar with this condition, so it is crucial to seek out professionals who have experience in treating patients with EDS. I recommend looking for specialists like rheumatologists, geneticists, or physiotherapists who specialize in connective tissue disorders. These specialists can provide personalized treatment plans and offer the necessary support for managing EDS effectively.
3. Build a Support Network
Next on the to do list would be finding a way to connect with individuals who are also living with EDS, whether it be through online support groups or local community gatherings. By joining these groups, you can share your experiences, exchange helpful tips, and receive emotional support from others who truly understand what you’re going through. The power of connecting with like-minded individuals can truly make a significant impact on your journey with EDS. Additionally, your newfound support network can offer valuable recommendations for healthcare providers who have expertise in dealing with EDS, ensuring that you receive the best possible care and support for your condition.
4. Communicate Effectively
By now you know how to find a doctor and the importance of a support group, but how do you communicate your needs to your doctor? My advice is to take charge of your medical appointments by advocating for yourself. It’s important to clearly express your symptoms, concerns, and treatment goals to your healthcare provider. To help you keep track of your health, consider maintaining a journal where you can record your symptoms and any patterns you observe. Make sure to document the frequency of your symptoms and how they impact your daily life. This valuable information can assist healthcare providers in accurately diagnosing and treating your condition.
5. Practice Self Care
Living with Ehlers-Danlos Syndrome (EDS) can take a toll on both your body and mind. It’s important to prioritize self-care in order to manage the physical and emotional challenges that come with this condition. Engaging in gentle exercises can help build muscle strength and enhance joint stability, while also promoting overall well-being. Additionally, make sure to prioritize rest and relaxation to recharge your body and mind. Seeking emotional support from loved ones or a therapist can also be beneficial in coping with the emotional aspects of living with EDS.
6. Seek Second Opinions
Seeking second opinions is last on the list, but it may be the most important! If you find that your needs are not being met or if you are unhappy with the care you are receiving from your current healthcare provider, it is very important to consider seeking out another medical professional for a second opinion. Don’t hesitate to explore other options to ensure you are receiving the best possible care for your health needs.
My Personal Journey with Hypermobile Ehlers-Danlos Syndrome
As someone living with Hyper-Mobile Ehlers-Danlos Syndrome, I understand the daily challenges and impact it can have on one’s life. From the constant chronic pain to the numbness and tingling in my extremities, EDS has presented me with unique obstacles.
However, through education, support, and self-advocacy, and proven tools I have learned to manage my symptoms and find ways to live a fulfilling life. It is essential for others with EDS to know that they are not alone and that there is hope for a better tomorrow.
Ehlers-Danlos Syndrome is a complex condition that requires awareness and understanding. By empowering ourselves through knowledge, advocating for proper diagnosis and treatment, and supporting one another, we can create a more inclusive and supportive world for those living with EDS.
For more support, visit all of The Mediocre Cook Chronic Illness Articles.
The information and other content provided in this blog, website or in any linked materials are not intended and should not be considered, or used as a substitute for, medical advice, diagnosis or treatment.
