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.
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.
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I am 33 years old and have the exact same thing you are describing. My hair has gotten progressively worse and so frizzy even though I have virgin hair and it air dries daily. I was only diagnosed with Ehlers-Danlos this week and am being referred to a geneticist. It’s so frustrating but at least I can hope this is the reason for my hair breaking just to have an answer. Thanks for sharing!
I always thought my hair was straight, but after trying the curly girl method I’ve realized my hair is wavy when it is short enough to not be weighed down, and when I don’t brush it (Brushing ruins/smashes curls). I’ve written about my curly girl journey here https://www.franklovesbeans.com/category/Hair/
I have a lot less frizz when I use the curly girl method because it helps get more water into my hair strands and keeps my hair more moisturized. I have still had occasional issues with hair breakage which surprises me now that I am delicately caring for my hair, but it’s far, far less than it used to be. Part of what confuses me is how the breakage just happens around the top layer of my hair. I thought if it was EDS related then all of my hair would be equally affected by the issue. So I’m not 100% convinced it is only caused by EDS but I think EDS may make my hair more prone to breaking and then other things (like not treating my hair carefully in the past) may make it worse. I’m just guessing though.
Thanks so much for all this information; yours is the most useful I have found after long google searches on the subject of hair frizz. My problem with frizz canopy/halo started in my late teens and despite trying everything possible over many years, nothing has worked. It has been pretty confidence sapping having hair like this. So your suggestion that treating hair as though it is wavy makes a lot of sense. I have even been tempted to get a very short cut to see if that will see new hair growing more healthily. But after reading your blog I will try to ditch sulphates, silicones and alcohol in products and attempt curly girl. Thank you so much for sharing your experience.
I just thought i would add to your post as no one has mentioned that the hair once leaving the scalp is already dead and the health of our hair actually comes from what we have going on internally and the health of our blood so things like anaemia and other deficiencies affect our hair along side collagen ive found taking a good quality multi vitamin and upping my protein intake has improved my hairs health alongside the obvious hair care, also silk pillow cases help ease friction on brittle hair
I have been trying to figure out my hair. I started having trouble with it when my back started. Ither me. It snarks from sleeping and instantly snarks when wet. I use a conditioner, and mask, and another product prior to drying. It’s only marginally better. I’ve upped my protein and calories, but nothing has any significant impact. I likely have EDS and was tested, but my dr no longer takes my insurance and refuses to give me the results over the phone. I plan on getting my PCP to request the records, once I get a new PCP.
My daughter has this, we have given up on her having healthy hair so we do a lot of cute head bands and hair wraps etc. Nothing has worked, not even the curly girl method. She does have to wet her hair everyday and add oils/creams to tame it but it is what it is.
I have dirty blonde hair that stopped growing much when I moved from my small community to a major metro area. All my health issues, undiagnosed at the time, got so bad all my plans were shot. Dysautonomia/POTS episodes got horrible, and my hair stopped growing faster than it would break if colored or if heat was used. It would get trimmed fairly short, grow out as I would stop using heat, then grow from me not coloring, then get fried again the first time I used heat, a ponytail holder, bad brush, slept on it “wrong,” swam, or lightly bleached it. My hair is fine and my nails are like yours.
This all began getting out- of- hand when I was 18 in 2003. About two years ago, we replaced our shower head with a filter that filters out fluoride and chlorine (amongst other things). Fluoride that isn’t bonded tightly reacts with and destabilizes collagen, and chloride ions bleach your hair and nails and break them down as well. The chlorine also was progressively making my MCAS so bad that shaving was giving me rashes and sores.
It took about a year of no coloring and just shampoo caps and lots of conditioners (no keratin! until it’s growing, although I had been doing that for most of the past decade) to get all the damaged hair gone. It had to grow out and break off. My hair is now the longest it’s been since my junior year of high school (below my shoulder blades in the back and mid arm in the front), and I’m 35. Vitamins help, women’s Rogaine after bad PCOS episodes helps, and not overdoing dry shampoo between weekly washes (no more– it dries the hair out to rinse out natural oils before they can absorb into the cuticle).
You have to be patient and wait for the damage from chemically-treated water on your shower (not to mention fluoride getting incorporated into the extracellular matrix in your connective tissue from drinking and consuming it). Try to go fluoride- free and chlorine free in your home. Our collagen is much less hard than other folks’ so that we cannot withstand daily bombardment of certain chemicals and even natural substances.
Your skin will get better, too– I’m considerably less itchy and have much less redness in my face and chest. My nails grow only a little better due to peeling, but like my hair, they are growing faster.
I’m 50 yrs old w/ EDS. My hair is extremely curly. Also thinning/falling out, extremely dry, breaking, & split ends. It’s always been like that, but it’s getting worse as I get older. It seems like it’s not growing anymore, although I know that’s just breakage. I haven’t used shampoo in a couple yrs. I don’t dye it or blow dry at all. I put conditioner on it a couple times a wk before pikking it. I have to pik it to keep it from going into dreadlocks, & b/c the hairs that fall out get stuck amongst the curls. I use hair grease once in a while, which is similar to Vaseline. Also almond oil & coconut oil occasionally. My hair is a mess but I feel the oils help. I wish I could stop the split ends & thinning. My fingernails are also messed up. They’re thin & soft like cheese. They rip backwards off of the skin if I try to use them at all, so I have to keep them very short. Best wishes to all those w/ EDS & hair probs.
My mind is blown. I for sure have undiagnosed EDS, and this fully explains the bizarre change in my hair, skin, and nails over the past few years. I’m going to get the genetic test to be certain.
My daughter has this, she has very, veru curly hair it is always frizzy. Curly girl doesn’t work but Keratin treatments help a ton and it helps weigh down her hair. Keratin and the like are against the “curly” hair routine but it is what works for her. She does wash her hair. If she doesn’t wash it makes her hair weird and matted so again this goes against the curly girl program. Here is what she does A) Wash and condition every 2-3 days. B) Uses conditioner with Keratin or sealent (I know it says not for curlys but she is not a normal curly and we notice a positive difference!) C) Uses at home cheap Keratin treatments (we have not tried these recommended on the product D)Strong leave in Conditioner followed by Argon or Coconut oil (we shop in the ethnic hair section for this, we sometimes use a little gel for special events where the hair needs more help but it looks crunchy/ hard) E) Lightly scrunch F) Do NOT touch or play with hair again G) Carry a spritzer (water is fine or a light leave in refresher) to use through out the day to refresh the hair and tame the frizz lightly scrunch.
I have newly-diagnosed hEDS, MCAS, POTS, and Raynaud’s. Up until about 8 years ago, my hair was gorgeous, thick, shiny… It was my “thing” that made me feel beautiful and I’d get compliments all the time. Now, I lose a handful of it every time I shampoo (2-3x/week), it grows much more slowly (used to grow like a weed), and I have breakage and those *frizzies* you’re talking about. I know it’s shallow, but it makes me feel so sad. I just don’t feel pretty anymore.
Hi there, I’m new to this journey and was just diagnosed with EDS. It is only a few days ago that I began to think my hair struggles might be related to EDS. Have you discovered any resolutions for your hair, nails and skin since your original post?
Same it sucks! Hair can be so beautiful but not mine. It zaps my self esteem also
I was dx with EDS 7 years ago in my 50’s. I have always had “bad hair”, baby fine, and was teased about it when young. I want my hair long, but it breaks after a few inches, so now some is at my shoulders and some about 4” on top. I don’t want to get it cut, but it looks so uncared for I’m not sure what else to do. Very tired of pony tail holders on part and then sticking the short pieces down with conditioner (that works btw and no alcohol). I also have Raynauds and dysautonomia, but not POTs, it’s the part where I cannot control my temperature – honestly that is about the worse part of the EDS with me, the constant taking off and putting on clothes because I’m either shivering or sweating….this takes place numerous times a day, sometimes several times an hour. It totally exhaust’s me.