Frontal Fibrosing Alopecia

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Frontal Fibrosing Alopecia

This is specifically for frontal fibrosing alopecia sufferers. To share information and support each other.

Location: Dubai UAE
Members: 594
Latest Activity: Jun 28

Discussion Forum

Regarding my successful trial with cannabis oil tincures!

Started by Robin. Last reply by koldobrew Jun 28. 72 Replies

I am letting you all know of my trial of using cannabis oil tincture on my hairline for the past 4 months. I was diagnosed with FFA about 5 years ago. I have used finasteride and clobetasol as well as tried steroid injections and doxycycline. I also…Continue

IPL Treatment (Intense pulsed light therapy)

Started by DW. Last reply by Solomider Jun 14. 1 Reply

I am considering IPL treatment for age related spots and rosacea on my face but I am wondering if anyone has tried this and if it has had negative effects on either their FFA or LPP? I certainly don’t want to risk triggering a flareup. Also, if…Continue

AIP Diet: Did you try it? On it now?

Started by illustr8r. Last reply by MeganLee5MQ Mar 17. 18 Replies

3 weeks in-this is what I noticed so far:I lost 7lbs.The first 4 days were just horrid! I felt terrible. After that, the cloud lifted and I felt great.Much more energy. Better mood and feel happier. It's shocking how good I feel. I keep saying this…Continue

Food Allergy Testing question

Started by NorthCarolinaMama. Last reply by sampeckard Feb 16. 8 Replies

Hello!I was wondering if anyone has been tested for food allergies to determine if a particular food is causing inflammation, which in turn could exacerbate FFA. I had the skin test a couple of years ago at an allergy clinic, and it came back…Continue

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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. :-)

Comment by illustr8r on January 4, 2022 at 10:08pm

Hi CurlyK and Mel-

I’m trying to find Louise’s post too!

Comment by CurlyK on January 4, 2022 at 9:33pm

Hi Melanie. I haven’t been on here is a long time but I received the same email. I can’t find her or that post on here either…

Comment by Mel on January 4, 2022 at 7:55pm

Hi there. I have not been on here in years, but I just saw a comment come through from Louise, who seems to be struggling. BUT, I don't know how to find that thread. :-(

Anyone know how?

Thanks!

Melanie

Comment by Finn on June 2, 2021 at 10:04am

Hi

I response to Toby I can attest that using Vanicream's Daily  Mosturizer, and their sunscreen  ( can't remember the name but it is a broad spectrum) and also the same company's shampoo called Fresh and Clear,  ( I use the medicated one) has been HUGE.   It's made by the Mayo Clinic and has zero allergens.. I guess that before using them was part of my problem because I have used these products exclusively for a year now in conjunction with being on Hydroxycloroquine 200mg once a day which I started a year ago also.  I have been on Finasteride for 4 years now - I hadn't really noticed any great shakes from using this to be honest  but don't want to risk stopping it.  I might though because I think it makes your sex drive like zero.  I have FFA and Female Pattern Baldness combined ( oh joy oh joy ) .  But I have to say that this past year ( in a pandemic I might add ) my hair has somewhat grown in!!!!!! , is much thicker and I don't even think about the thin areas for days at a time.  I find it looks best a day or two after washing it as it thickens up but I doubt anyone would notice anymore that I have thin areas.  And they certainly would have a year ago.  Hope this helps someone out there.. Drs. say I am a success story .. Ha.. Oh- I use minoxidil religiously twice a day ( the 5 %).  

Comment by Toby on June 1, 2021 at 3:44am

Hi ladies,  so sorry Lu, I feel your words,  my FFA symptoms increase when I am under stress. Is there any way you can lessen stress?

A doctor at Massachusetts General found in a study that 76% of patients with FFA and LPP were allergic to ingredients in hair products and facial moisturizers and personal care products.  That’s huge.

 Fragrance, gallates, Linalool, methylchloroisothiazolinone, MCI/MI, were indicated as some of the ingredients that patients were allergic to.  The doctor found that without changing anything else in the treatment plan, eliminating the allergen for 3 months resulted in 59% having decreased scalp itch and 70% had decreased scalp redness.  The doctor recommended patch testing to determine what personal care products we may be allergic to.  There were more chemicals than I listed but the chemicals I listed had larger percentages of patients being allergic to that chemical. The doctor said avoiding the allergen greatly lessened the FFA symptoms but did not cure FFA.


Another thing I find interesting is that some products contain formaldehyde releases such as bromopol, DMDM hydantoin, quaternium-15, diazolidinyl urea polyoxymethylene urea, and sodium hydroxymethylglycinate.  We know with FFA our stem cells in our hair follicles are dying so our hair loss is permanent. So why are we washing our hair with formaldehyde?

I will try to find the article and post the link.

Best to all you lovely ladies. I miss the activity on this site.

 

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