Ehlers Danlos Syndrome (EDS) is a complex of not very common hereditary diseases it is a disorder of the connective tissues in the body (such structures the most support the skin, the bones of the joints, distinct vessels, old body organs). The experience seems like a long confusing road to most of the people especially when they grow-up with ECLE.
And you are not alone reading this and nodding your head in agreement. Quite a number of individuals may discover that they have been living with EDS when they are well advanced in life after years of having inexplicable symptoms.
1. You Were Always More Flexible Than Other Kids
Individuals diagnosed with EDS are hypermobile, a condition that makes their joints extend beyond the normal limit. When you were a kid, perhaps you were the roly poly girl in school who did the splits or bent your fingers in a way that others did not.
2. Common Joint Dislocations or Subluxations
The fact that your shoulder comes out during play or your knee gives out without prior warning could have been the order of the day during your childhood. The frequent problems of EDS kids are the joint dislocation or partial dislocation (subluxation).
3. Bruising with minimal or no injury at all.
You would have bruises on your arms or legs and could not recall how they were acquired. You could have always had a sensitive skin, which bruised even after slight hops.
4. Skin That Is Smooth, Soft, or Sleek
The skin of some people with EDS is showily soft or elastic. You may have heard people say that your skin was as soft as silk or that you would look a little different compared to the other people.
5. Constant Fatigue
You were always too fatigued compared to your friends. You felt tired even in simple tasks such as walking in school or climbing stairs.
6. Pain in Young Age
Backache, joint pains, or even muscular aches: you may remember some of these symptoms as a child or teenager and these pains usually had an obscure reason.
7. Increasing Pains That Could not Stop
Other children also experienced such growing pains and then they turned into adults like other adults. The pain was made the reality of the everyday living.
8. Stumbling or Falls
When you stumble over things, bang into furniture, or generally struggle to coordinate yourself, there is a chance EDS is up to its mischievous coordination tricks.
9. Never-diagnosed Digestive Problems
You might have carried stomachaches, constipation, nausea, or bloating with you even since childhood. A lot of individuals with EDS further experience problems with their GI.
10. Poor Healing and Thin Scars
You may also have very slow healing and wide scars after your incisions. The skin is easy to open as well in other individuals with this disorder EDS.
11. Trouble Sitting Still or Being Unable to Sit Down and Remain Like It A while
You might have never been able to sit in one place as sitting at one point was causing pain in your joints. Your style meant that you were in continuous movement to be comfortable.
12. Touch, temperature or fabric sensitivity
You might have been particularly sensitive to textures, temperatures, or even a light touch to a greater extent which makes this everyday life more complicated.
13. School Sports Trouble
You would like to participate, and your body refused to obey. You could have been injured and sat on the bench or you could have shunned sports.
14. Regular headache or migraine attacks
Since you had joint problems, you had headaches as part and parcel of your life or even because of neck instability or poor posture.
15. Problems waking or resting well
And even when you had slept eight hours you still woke up feeling that you did not sleep. Low quality sleep is also common in EDS.
16. Dizziness with Orthostatic hypotension or Pots
When you used to feel dizzy or your heart rate increased when you stand up abruptly, you could observe the symptoms of Postural Orthostatic Tachycardia Syndrome (POTS) that is typical of EDS sufferers.
17. Fear or depression
Not being diagnosed with the symptoms and the physical restrictions creates problems in people mentally. Since early ages, you might have experienced anxiety, misperception, or found yourself in an overwhelmed state.
18. Dental Problems
You may have experienced loose teeth, gum problems or suffered regular dental work at the hands of connective tissue discrepancies in your mouth.
19. Sensitive or Unusual Reactions to Medications
You might have found your medications have an impact on you differently much stronger side effects, allergic reaction, or unusual symptoms were usual.
20. Cannot hold a Pen or write long
School work may be difficult because of hand fatigue, pain in the joint in fingers, or a weak grip.
21. Handwriting or Fine Motor Problems
Activities such as putting on buttons on clothes or shoe strings might have been a nuisance. Your fingers just did not cooperate in the way that you had wanted.
22. Relatives Having Similar Symptoms
In retrospect, you can discover that you have the same signs as a parent, sibling, or cousin. EDS has a hereditary nature hence most of the time either they are unaware families tend to run it.
23. Nobody Believed that You Were Hurting
Maybe you as a child heard the words, it is all in your head and you are a drama queen. But now you know that you suffered.
Life as it is with EDS
The awareness of these symptoms does not make the past different, but will make sense of it. Living with EDS as a child, can be lonely and confusing, and you are no longer the only one. Things are changing and an increased number of people are being diagnosed and are receiving the attention they need.
Ehlers-Danlos Syndrome has no recognized cure, though it can be managed by use of physical therapy, pain management, lifestyle modification and conscious behavior limits. Creating a support system in the form of friends, family, etc. or online support groups can be helpful.
Final Thoughts
Should you find yourself in this list, then think of speaking to a medical worker, particularly a health worker who has some experience of dealing with connective tissue disorders. It is not always an easy road to get a diagnosis but the bottom line is to understand your body because until you understand what is normally normal to you on your own, you are not ready to take care of it.