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7 Years on......

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Mrs Mc View Drop Down

Joined: 07/February/2016
Location: Devon
Status: Offline
Points: 18
Post Options Post Options   Thanks (0) Thanks(0)   Quote Mrs Mc Quote  Post ReplyReply Direct Link To This Post Posted: 12/August/2017 at 3:45pm

Yes this disease is really quite horrible.  

In reply to your questions, my hair loss is diffuse and I have lost approx 80 - 90% of density now.  I remember approx 12 months ago looking on the internet at hair replacement solutions, thinking if I can just  keep my hair as it is now  (not brilliant, but adequate), then I shouldn`t need to go down the hair replacement route.  However that was not to be.  Unfortunately there is also the fear of entering unknown territory ,  of a world you know little about with regards to hair replacement.  I did a huge amount of research as for the best solution for me and hence I decided upon `Beautiful Betsy` which is brilliant.  There were mixed reviews about the Lucinda Ellery hair replacement system  who I initially considered, but the cost of her system was prohibitive in any event; however for me, the fact that I have scarring alopecia where the scalp constantly burns was the reason for not seeking a more `permanent` Lucinda Ellery solution, as with a topper you can take it off.  

Recently my hair loss is now worse and so is the scalp burning.  Whether this would have been the case with or without the topper is not known.   I have tried to deal with this illness by `natural` means ie vitamins etc; however I have had to take hydrochloroquine as I just can`t cope with the pain any longer.   In addition, on the LPP Let`s Put out the Fire Facebook page , one sufferer has recommended taking  Cannabidiol (CBD).  This is described as  `one of about 100 cannabinoids found in cannabis but it is one that has been found to be particularly beneficial without any side effects`. I might give it a go as there is a supplier in the UK.  When I am not in pain I can deal with this illness so much better.  However the topper has been a godsend and in answer to your question, is light and I really don`t feel I am wearing anything on my head. It doesn`t make me feel hot either. I always felt that before I had my topper that people were looking at my very sick hair with pity (it is likely that they were`nt but in my paranoia I thought this to be the case!).  I don`t think anyone gives my hair a second glance now.  I`m about to give it a wash and deep conditioning  this afternoon as it deserves a treat!

As an aside,  my friend and husband came to stay last week-end (I hadn`t seen them for three years).   Nothing was mentioned about my hair `addition` and they didn`t eye me up  in a strange and unusual manner so can only assume they thought it was  my own hair!  

One final point - can I suggest you do two things - join an alopecia support group in your area.  I am a member of the Somerset group and  was extremely nervous about attending my first meeting but it has been an absolute lifeline.  Plus  you need to join LPP Let`s Put out the Fire face book group which is specifically for this illness. Information and support are key to  dealing with this illness.  Once you come to terms with it (which is not easy as  during the past 12 months I have had no zest for life and have probably been depressed)  then you can move forward with finding a solution which suits you and there is a solution out there, believe me. I can cope with the illness now as I don`t want it to become the winner and destroy me and I now feel with the aid of my topper, I have the upper hand!
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