Do People with Ehlers-Danlos Syndrome Always Look Much Younger?

Ehlers-Danlos Syndrome (EDS) is a group of inherited connective tissue disorders that can affect the skin, joints, and blood vessels. While it is true that many people with EDS may indeed look younger than their actual age, there is no strict rule or guarantee of this. The appearance varies widely depending on the type of EDS and individual factors.

Types of Ehlers-Danlos Syndrome and Skin Appearance

There are several types of EDS, and each type can present differently. Type III EDS, for example, is often associated with a less wrinkled appearance due to the quality of collagen in the skin. Interestingly, some individuals with EDS may look much younger than their actual age, while others may show more signs of aging.

I, a 52-year-old medical doctor with EDS, can attest to the variability in appearance. My skin remains soft, and while I do have forehead wrinkles and lines, I do not look as aged as I am expected to, considering my past habit of smoking until I was 30. The combination of hypermobility and vascular EDS has influenced my appearance, but the experience of being young-looking stems from my early teens through my 20s. Even as a child, I was often mistaken for being younger, a fact that possibly contributed to my own insecurity about my age as I learned why I looked so much younger.

The Impact of EDS on Appearance and Health

For some, EDS brings about a much younger appearance, but this is not a universal truth. The combination of factors, such as the type of EDS, lifestyle factors, and general health, all play a role. EDS can also lead to significant health issues, including:

Organ failure Joint surgeries Becoming wheelchair-bound

These health challenges can overshadow the idea that one might look much younger. For example, my life expectancy is 45, which means that while looking younger is a positive aspect of EDS, it does not mitigate the more severe health implications that come with the condition.

Personal Experience and Confusion

My personal experience with EDS has been complex. While I have very soft skin and have been told at nail salons that my hands are smooth, the condition can also have adverse effects. Poor scarring, which is common in EDS, can sometimes make a person appear older. For instance, my hands look remarkably youthful, but they also have a unique appearance due to the translucent, veiny skin, which is somewhat eerie.

When it comes to age guesses, I have been mistakenly considered my daughter's sister nine times out of ten, even at 47. This youthful appearance is a result of the reduced wrinkling and overall softer, more supple skin that is characteristic of some types of EDS.

While the younger appearance can be a blessing, it is important to recognize that EDS is a multifaceted condition with a range of challenges and health issues that cannot be ignored. Looking young may bring some advantages in terms of perception and social interaction, but it is not a substitute for the medical and physical challenges that come with the syndrome.