23 Signs You Grew up with Ehlers-danlos Syndrome

Ehlers-Danlos Syndrome (EDS) is a group of genetic connective tissue disorders that affect the skin, joints, and blood vessels. People with EDS are often more flexible than normal and can suffer from joint pain and skin fragility. While the condition is rare, it’s important to be aware of the signs so that it can be properly treated.

Recognizing the Signs

EDS can be difficult to diagnose as it can be mistaken for other conditions. It is important to be aware of the signs so that it can be properly treated. Here are 23 signs that you may have grown up with EDS:

1. Joint Pain: Joint pain is one of the most common signs of EDS. People with EDS may experience joint pain in their hands, feet, elbows, and knees.

2. Hypermobility: People with EDS are often more flexible than normal. This can be seen in their range of motion and ability to do activities like yoga that require extreme flexibility.

3. Skin Fragility: People with EDS can have fragile and stretchy skin. This can lead to easy bruising and tearing of the skin.

4. Poor Wound Healing: People with EDS may have difficulty healing wounds. This can lead to scarring and other skin complications.

5. Early Onset Arthritis: People with EDS may develop arthritis at a young age. This can cause joint pain and stiffness.

6. Gastrointestinal Issues: People with EDS may experience digestive issues like constipation, diarrhea, and acid reflux.

7. Chronic Fatigue: People with EDS may experience chronic fatigue, even when they are getting enough sleep.

8. Muscle Weakness: People with EDS may experience muscle weakness, even when they are exercising regularly.

9. Dizziness and Fainting: People with EDS may experience dizziness and fainting, especially when standing up quickly.

10. Abnormal Posture: People with EDS may have an abnormal posture, such as a swayback or a hunched back.

11. Scoliosis: People with EDS may experience scoliosis, or an abnormal curving of the spine.

12. Easy Bruising: People with EDS may experience easy bruising, even when they are not injured.

13. Recurring Headaches: People with EDS may experience recurring headaches, even when they are not under

Grow­ing up with Ehlers-Dan­los Syn­drome (EDS) is an often com­pli­cat­ed and chal­leng­ing expe­ri­ence, char­ac­ter­ized by a col­lec­tion of inter­con­nect­ed signs and symp­toms that can make every­day life a strug­gle. Unfor­tu­nate­ly, many peo­ple who have EDS are mis­di­ag­nosed in the years lead­ing up to their offi­cial pro­nounce­ment of its pres­ence, which can make iden­ti­fy­ing these char­ac­ter­is­tics even more dif­fi­cult than they are nat­u­ral­ly.

For those who live with EDS every­day, or those who may just be start­ing to sus­pect that they may be suf­fer­ing from the con­di­tion, here are 23 signs you grew up with Ehlers-Dan­los Syn­drome.

1. Hypermobility: Joints move eas­i­ly fur­ther than expec­ta­tions for the age and sex of the patient.

2. Joint pain: Pain­ful joint dis­or­ders can be expe­ri­enced as a result.

3. Easy bruising: Unusu­al­ly easy bruis­ing can result from poor skin qual­i­ty, thin­ning, or tis­sue dam­age.

4. Fatigue: Patients with EDS have been found to suf­fer from chron­ic exhaus­tion far more than the gen­er­al pop­u­la­tion.

5. Stretchy skin: Skin can be par­tic­u­lar­ly elas­tic and can be eas­i­ly pinched and rolled.

6. Gaps in between skin: Vacu­oles can be seen on the skin in some cas­es; pit-like hol­lows left after pinch­ing skin.

7. Slow wound heal­ing: Wound heal­ing can be slow­er than nor­mal and they are prone to scar­ring.

8. Tear­ing of tis­sue: Include mus­cles, ten­dons, and lig­a­ments, a com­mon fac­tor in suf­fer­ers.

9. Dehy­dra­tion: Phys­i­cal exhaus­tion, lack of flu­id con­sump­tion, and pro­longed exer­cise can lead to an increased risk of dehy­dra­tion in EDS patients.

10. Poor vestibu­lar coor­di­na­tion: An abil­i­ty to main­tain bal­ance can be dif­fi­cult for many EDS suf­fer­ers.

11. Migraine headaches: Unusu­al­ly high reports of migraine headaches in EDS patients.

12. Inver­te­bra­tal sub­lux­ations: Sub­lux­a­tions can cause back and neck pain, as well as oth­er sym­pa­thet­ic dis­or­ders.

13. Autono­mi­caf unreg­u­lat­ed: Unreg­u­lat­ed heart rate, blad­der or intes­tine con­trol, tem­per­a­ture change, etc.

14. Autoimmune dis­or­ders: A pre­dis­po­si­tion to au­toim­mune dis­or­ders can be com­mon in EDS patients.

15. Aller­gies: Exag­ger­at­ed immune response to food, en­vi­ron­men­tal, and oth­er al­ler­gens can oc­cur in some pa­tients.

16. Chronic dehy­dra­tion: Dehy­dra­tion can be a sig­nif­i­cant is­sue with those who suf­fer from EDS.

17. Scar­ring: Due to slow wound heal­ing, many EDS pa­tients may ex­pe­ri­ence sig­nif­i­cant scar­ring in­stead.

18. Poor sleep qual­i­ty: Unusu­al­ly promi­nent sleep is­sues are not un­com­mon for those liv­ing with EDS.

19. Stress in­ten­si­fi­ca­tion: Stress can in­ten­si­fy some symp­toms of EDS, and it can also trig­ger oth­ers.

20. Reduced fi­brous tis­sue: Less­ened fas­cial and col­la­gen tis­sue can be a ma­jor prob­lem in suf­fer­ers of EDS.

21. Spon­ta­neous dis­lo­ca­tions: Ex­treme­ly loose joints can make move­ments un­pre­dictable, caus­ing dis­lo­ca­tions to oc­cur with­out warning.

22. Dim­pled/dow­nel­y­ing skin: Un­usu­al­ly docile en­vi­ron­ments of the skin can be par­tic­u­lar­ly con­cern­ing in pa­tients with EDS.

23. Osteoarthri­tis: Un­der­ly­ing tis­sue weak­ness can lead to it­er­a­tive joint dam­age, caus­ing arthri­tis to be par­tic­u­lar­ly com­mon in EDS sufferers.

If you have been ex­pe­ri­enc­ing any of the above symp­toms, then you may want to con­sult with a doc­tor to see if you have EDS and to dis­cuss your di­ag­no­sis and treat­ment op­tions. By be­ing aware of the signs of EDS, you can take steps to proac­tive­ly man­age your health and make life a lit­tle eas­ier.