H IS FOR HAIR LOSS – Lupus Awareness Month: Day 10


Hair to day. gone tomorrow!

Yet another possible symptom for lupus sufferers is losing your hair. It is my understanding that for most people this is fairly minor and whilst upsetting does not have a direct impact in that it does not cause physical pain but most certainly contributes to denting one’s emotional well being.

People with Discoid Lupus (affecting only the skin) may suffer hair loss at the site of the rash. People with SLE (Systemic Lupus Erythamatosus) are more likely to experience a general thinning of hair which may develop into a more serious loss for a few.

In my experience, early after diagnosis and before the meds had started to get control I lost most of my body hair, noticeable when I looked in the mirror one day and saw that I had no eyebrows or lashes! At the same time as this I realised that the soft hair on my arms had also disappeared! The same applied to under arm and pubic hair! How weird was that?! Luckily for me the hair on my scalp remained intact apart from a persistent thinning but that has found a level and thankfully remains stable, infact, the hair on my head is looking pretty good I think!

Thankfully I am not vain so to be without brows and lashes did not really bother me other than needing reassurance about maintaining healthy eyes since the protection afforded by my lashes was no longer there. As I write I can tell you that the pathetic lashes that eventually grew are currently looking a little patchy. I will never be able to model for mascara, and trying to wear it to make my lashes look better usually results in a poke in the eye so frankly I’d rather not bother! Who’s looking at me anyway!

Early morning butterfly rash and my luscious lashes! NOT!

Early morning butterfly rash and my luscious lashes! NOT!

Now here’s a funny thing- I have always had very straight hair and after a bout of serious hair thinning it grew back wavy! My hairdresser friend thought I had secretly been for a perm ! Somehow that has changed again and it is now mainly straight but has a ‘flick’ to it. It continues to come out more than normal (handfuls in the shower tray) but not so anyone else would notice and over the last three years has changed completely from being a mousey light brown to a lovely silver blonde of which I am rather fond!

Every cloud has a silver( hairy) lining!


Author: onoodlesstitchcraft

An erstwhile teacher who has taken a new path due to illness and returned to an earlier existence exploring her artistic and creative skills of stitchcraft. My oldest son laughs and says I am as mad as a spoon, qualifying the comment that I am not like other middle aged mothers... well hurrah for that! So what do I do? I love to cook, I am never without a craft project or a few on the go, I love my garden, walking, nature and the environment. I am a magpie for vintage patterns and love colour. I get pleasure from creating and giving to friends. I have a rabbit! I ride a bike and recycle... Drink too much tea and like nothing better than to lunch with friends. Snuggling up on cold winter nights is essential. I like the theatre; musicals and dance in particular. Amongst my favourite films are Seven Brides for Seven Brothers, Singing in the Rain and Fried Green Tomatoes. I love to read anything from Crime thrillers to classics (love Wuthering Heights) or biographies about inspirational people. I hate sexism or racism and disingenuous people. I value friendship and above all else my family.

6 thoughts on “H IS FOR HAIR LOSS – Lupus Awareness Month: Day 10

  1. I’m glad you have found a positive amongst all we are learning about from you. x

  2. I am glad to know I am not the only one! I had long beautiful hair and lashes now thanks to Lupus my eyelashes have thinned greatly and my beautiful hair is no more. Now it is a thinning matted mess. I have tried everything to get it back to normal even on the meds its not helping. My hairdresser says when she shampoos my hair just eats it up no lather. Also my hair that was once straight as a board has now become wavy to. I feel for you, I am in your same boat 🙂 Stay strong!

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