Hair Breakage And Ehlers Danlos Syndrome

Last spring I noticed that I had a lot of “frizzies” suddenly. My entire life I have considered myself to be really lucky when it comes to my hair. It’s always appeared silky and shiny and has been tangle-free and frizz-free regardless of the products I use. That seemed to change almost overnight.

I googled looking up causes of frizz or hair breakage and found answers like using heat (blow dryer, curling iron or flat iron) on your hair too often. Dying or bleaching your hair too often. Chemically treating it too often, and so on. I knew that none of these were the cause of my problem because I always let my hair air-dry, and never curl or straighten it. In the last year I have blow-dryed it exactly one time, and I used the lowest heat setting that my flat iron offers, and I used heat protecting spray.

So although I didn’t understand the cause of the damage to my hair, I started trying products aimed at people with dry or damaged hair. I’ve used argan oil, deep conditioners, hair oil treatments, hair masks, and literally a dozen different types of conditioner. Some helped a little bit, but none came close to restoring my hair to the shiny locks that they once were.

Over time the breakage has gotten worse. For the past few months the amount of “frizz” on top of my head has been so bad that I don’t feel comfortable leaving my hair down. On bad days, I have a solid inch of frizzy, broken hairs that form on top of my head. I also have dry, frizzled bits that stick out on the sides. Here are a few photos.

frizzy damaged hairfrizzy fly aways broken hair


I had heard women talking about how pregnancy can cause hair breakage. I started hormonal birth control about 2 months before I first noticed the damage, so I thought maybe it was related to that. At my yearly check-up, I asked my doctor if my birth control may have changed my hair. She didn’t seem to think so, and referred me to a dermatologist.

I had an appointment with the dermatologist today. He seemed happy that I was just having hair breakage and not loss or thinning (no thin patches or bald patches). He agreed that it was likely NOT the birth control. He asked about my hair-care habits and diet, etc. Nothing seemed like an obvious red flag. He asked about how my chart (apparently sent over from my primary care doctor) listed me as having ehlers danlos syndrome. I confirmed that I had it. He said that is likely the cause for me, because it is a collagen disorder and collagen plays a large role in skin, hair and nail health.

He asked to push on my nails. He said they were really thin and weak. I’ve always been able to tear my nails with just my fingers. Oddly, it never occurred to me that my nails were unusual. I just thought of other peoples nails as thick or hard. A little self-centered to say the least! And in the past year or so I have noticed that my nails have been ‘flaking’ more often, and I’ve had some cracks in my nails as well, which I never had before.

It still seems a little unusual that my hair seemed to change overnight. Though with EDS new symptoms can and do pop-up unexpectedly.

The downside is, there isn’t a whole lot I can do about fixing my hair if it is caused by my faulty collagen. He suggested that I take prenatal vitamins (I am not trying to get pregnant) because they are great for hair and nail health. So I will be trying that but otherwise I am just stuck with frizzy, brittle hair I guess. Fingers crossed that the supplements help.

See more posts like this: EDS

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