Comment

Comment by pauliegirl on June 6, 2023 at 3:53pm

Hi Elizabeth! Oh my goodness you have been through a lot! Hopefully the clot situation is resolved. My question for you is have you been losing hair diffusely (all over, not in patches)? I ask because while I have a seven year old diagnosis of FFA, I developed telogen effluvium after a Covid infection TE is a self resolving diffuse hair loss. I lost hair in handfuls over a six week period. And what was left was dry and just a generally yucky texture. It seemed really thin, but it was really just because I lost hair density, losing approximately 60 to 70% of my hair. Again, telogen effluvium is self resolving, and the hair grows back. It generally hits 2 to 3 months after a very stressful situation, like having a baby, enduring a significant death loss or a serious illness.

Hoping the best for you!

Jamie

Comment by Elizabeth W on June 6, 2023 at 3:43pm

In February I had hip replacement surgery and developed blood clots on Memorial Day weekend.  This past week my hair's texture seems to be thinner and more like a baby's hair.  Has anyone experienced a similar situation?  I was diagnosed with FFA in 2018.

Comment by Maddy, California, U.S. on February 5, 2023 at 12:18pm

Hi Louise, I am responding to your message here since I could not figure out how to send a private one either. I'm sorry you are feeling so down. FFA is definitely an ongoing struggle. Just know that there are other people out here feeling the same way. Sending you a big hug. 

Comment by SuzyQ on February 4, 2023 at 5:12pm

Hi, I would like to comment on Louise's comment but I'm not sure how. I've tried clicking on her name highlighted in blue but I get a page saying that what I'm trying to do is not allowed. I just wanted to tell her how much I appreciate her honesty. Everyone on here is so positive but for me FFA really sucks and really hurts and it's feels good to know that someone else feels the same way I do. 

Comment by Louise on February 2, 2023 at 7:28pm

Hi,

Just started the 7th year with FFA. 

Soo.. many treatments, nothing works. 

Soo.. many hair pieces, no one works

Soo.. many therapists, no one works

Soo...many lost years

Soo..much hatred

Soo.. Isolated

NO love

Wasted life

Biggest fear to die bold

Anyone here with the same feelings

Comment by Nerida on January 7, 2022 at 11:49pm

Tessa, 

Most individuals will qualify for a tax rebate on their wig under the Taxation Ruling TR93/34. Section 159P of this ruling allows for tax rebates on net medical expenses. Those expenses include the cost of medical or surgical appliances that are prescribed by a qualified medical professional, such as a medical or surgical wig. Individuals are entitled to a rebate for net medical expenses that exceed $1,000. I've known about this for awhile and haven't done it yet but this year I will.  I've been keeping my receipts and will give them to the accountant at tax time.  Sometime between now and then when I'm seeing the doctor for some other reason I'll ask him for a note just in case it's needed to prove I've got alopecia.

Also, sometimes it can get covered in part by private health insurance depending on provider and extras cover.  I'm not covered by mine with NIB.

In NSW there is a program called Enable NSW but it's a government program so it's not the easiest to figure out.   enable.health.nsw.gov.au  I haven't used this program.  I was just looking at the criteria and I'm shocked to see that FAA is not on the list, I thought it was.   If you have Alopecia Areata, Tichotillomania, Androgenic Alopecia, cancer or temporary hair loss it's seems pretty cut and dry but FAA might need a further application or at least a discussion with someone in that department. Looks like it would be worth the ring around.  As a side note QLD , NT and ACT don't have any programs that I'm aware of.  

When it comes to the next tax year I'll let everyone know how I got on with mine.

 

Comment by Tessa on January 6, 2022 at 8:19pm

Nerida, How do we access that money in Australia? No one has suggested that to me. I live in Sydney.

Comment by Nerida on January 6, 2022 at 4:36am

Time of a laugh everyone.  I think Elon Musk has been on this website.  He has stolen my haircut!  I may yet get "I love Elon" tattooed on the side of my balding head.    Screen%20Shot%202022-01-06%20at%208.35.24%20pm.png

Comment by Nerida on January 5, 2022 at 10:40pm

I hope someone was able to message Louise to give her a little support.  When I search up Louise there is only one that comes up in our group.  Swedish Louise?  Push through Louise.  We are here if you need to talk more as I'm sure many in this group have had similar experiences.  If things are really at that their lowest please make the courageous step and talk to a health professional such as a psychologist.  A psychologist isn't going to judge you, they are going to want to help you. Do you have any government support for financial assistance with purchasing wigs?  In Australia when it is over $1000 a year you can claim them on Tax and if you are of low income there is other help available to assist with purchase.    My favourite wig cost $400 AU (synthetic).    We are all here if you need us Louise.  Take care.  

Comment by Mel on January 5, 2022 at 6:50pm

@illustr8r @CurlyK - OK, thank you. :-)

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