Losing my hair? | Frontal Fibrosing Alopecia | Skin cancer
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- เผยแพร่เมื่อ 19 พ.ค. 2022
- I decided to see a new dermatologist. She was very thorough and took a biopsy which I will hear back soon. She also discovered my hair loss. This was shocking news, however I am taking it in stride and will be researching and documenting as I continue learning.
#skincancerawareness #frontalfibrosingalopecia
#aktinicketosis
Google is all I know so far:
Frontal fibrosing alopecia (FFA) is a form of lichen planopilaris that is characterized primarily by slowly progressive hair loss (alopecia) and scarring on the scalp near the forehead. In some cases, the eyebrows, eye lashes and/or other parts of the body may be involved, as well
I'm so sorry for your diagnosis of Frontal Alopecia, but there are options for you. I am a hair loss specialist and have had clients with this issue. Right now I am working on a client with FA and I am working to be able to bond a piece all around her hairline so she is able to pull her hair back. Find a hair loss specialist to find a solution for you. Keep the faith!
Thank you for commenting! I appreciate all the information I can get! I have moved up my appt to discuss treatment and/or biopsy for the FFA. I am now recovered from my basal cell Mohs surgery and plan to begin my concern with the hair loss.
I’m so sorry about your diagnosis. Over the past two years my eyebrows, eyelashes and my hair has started thinning. It is taking me multiple doctors to finally diagnose me two months ago with frontal fibrosing alopecia. I’m now waiting to get into see a specialist in October. In the meantime, my hair keeps falling out, and I have developed bald spots in the frontof my hairline. It’s hard to feel pretty or attractive when your hair is falling out. However, you are so brave for putting this video out, so that people like me know that we are not alone.
I’m so very sorry you are dealing with baldspots. I have decided not to treat mine…yet. I did some research on my own and decided not to use the prescription steroid cream. I have continued to notice the hair above my ears receding and I no longer can pull my hair back, but my hairstyle hides it for now. I plan to invest in wigs if necessary. I’m constantly following the “wiggygirl” on instagram. There are some really nice wigs nowadays!
Awww Kathy, thanks for being vulnerable with us. You are GORGEOUS! I know this is hard for you, but you’re amazing, so I just know you’ll be fine. ❌⭕️❌⭕️
I appreciate having so many wonderful friends and my family to support me. I shed my tears and God has a plan. I have some research to do.
Happy Birthday to your boys! Sorry to hear about the alopecia. I can imagine that has to be really hard. You are such a beautiful person inside and out! Your strong and you got this! Sending love Kathy!
It is so sweet to read your comment and I appreciate your support! John was surprised and I enjoyed having my family all together!
Hey Mrs Kathy. Stay positive and embrace your strength. Your are a beautiful soul and our prayers are with you. Im going through some stuff hopefully one day I will share. Glad I caught this upload. Take care.
Enzo! Please know I am here for you as well! When you are ready to share; I will listen and I will keep you in my prayers. You can always reach me privately. Love you and Eve!!
Yes. Thk u. Thk u. I’m going through it as well. FFA. Trying to get as much info from people going through this as well. Thk u for sharing. Pls don’t stop. It is helping
I appreciate your comment. I’m sorry you too have faced this diagnosis. I have chosen at this time not to treat with medication or steroids. I’m currently using a biotin supplement and serum. I will do a vlog regarding this soon.
I’m glad you changed doctors! Saying prayers for you! Happy birthday to your boys! 🎂
Me too!! I love you Heather!
@@Kathysvlogchannel love you too!
Kathy I found you through Optavia and while scrolling this morning saw this post. I have FFA and have had it for about 5 years now. It’s a tough one. Our hair is such a focal point. Once things start changing more for you, if it does, there are sooo many incredible wigs/toppers on the market now. You can rock that. We can’t change what’s happened but you can make it work for you. If you’d like to chat let me know and we can go off line. ❤️❤️❤️
Hi - I’m just seeing your comment today; I did not get a notification for it. I received a comment today from someone else which I am glad as it caused me to come find yours. I would appreciate connecting with you via email. Can you send me an email kathyhawkins@charter.net. Thank you!
Sorry to hear about the bad news Kathy . You look great as always all the same . Stay positive . Happy birthday to your kids .
Love and Peace and Blessings to you all .
Philip, it is such a fun feeling hearing from you! I miss you! Thanks for your kind and uplifting comment! XO
@@Kathysvlogchannel Thanks Kathy . Same to to you . ❤️
Thank you for sharing! I started reading about your journey with the combo cream on your face as I'm in the recovery stage of that myself. Then I saw your alopecia post, which confirmed that God led me to find you! 🙏 I was diagnosed with that a couple of months ago and have been grieving in silence. My dermatologist has me trying a few things, but I'm not too hopeful, based on my other research. I'll see if I can find the Facebook page you mentioned for a little support. Thank you again!!
I’m glad my videos are helpful; and I hope to be encouraging for others as well. I am choosing not to treat my alopecia at this time because I fear worse side effects with steroids, so I am attempting to take vitamins and use a biotin serum boost cream. So far I do not notice any hair growth but my hair style hides the loss above my ear.
Omg were like sisters from another mother. I totally understand your pain and feeling of being so scared because I was diagnosed with same thing last February. My hair has always been so important to me and now I count every strand. I keep hoping for a miraculous new cure❤️❤️
Hey - It does help having other validate my feelings! I’m certain more sensitive to others who are facing much worse! Since this video, I have joined a fb group of other diagnosed with FFA and I continue to research. I see my dermatologist on June 24 to determine if I need a plastic surgeon for my Mohs surgery or not. I’m really unsure about my FFA diagnosis and wonder if my forehead receding is from the Efudex treatment 2 years ago.
God Bless You My Sister Kathy
I appreciate your kindness and support!
Best of luck to you ❤🙏🏻
Awww big hugs!!
Thanks Pam!!!
Kathy I’m sorry that you have things to deal with, getting older and experiencing issues is no fun. I say that because I’m getting older to, part of life 😒 Sending hugs and prayers for peace. Happy birthday to your sons!
Wendy! It is comforting hearing from you! I have so many fun memories of our time together! I hope you and your family are well! It would be wonderful to catch up privately! XO
I was just diagnosed with Lichen Planopilaris & Frontal Fibrosing Alopecia, so I can completely relate to the emotions that you are experiencing. I'm now using a topical steroid 2x a day and I have received 2 different rounds of steroid injections. In addition, I was already on Plaquenil (hydroxychloroquine) for a another pre-existing auto-immune disease, but they have increased my dose for 3 months. Thankfully the massive shedding has calmed down and my scalp redness & itching has subsided. Hopefully this good news will continue
Hello how are you doing now? I have yet to treat my Fibrosing Alopecia. I'm only still noticing most of the loss above my ears and I contour that area with makeup.
Hi Kathy, I came across your channel by accident. Let me rephrase that. God intended me to see it and help you out. I am a RN and I also have FFA. I was diagnosed in 2018. I have lost about a finger width of my hairline and above my ears. Hair is gone in the temple area. Have had a biopsy from the scalp that backs up the diagnosis. No one knows exactly what causes this horrible disease that is extremely rare. It is believed to be caused by our immune system attacking the hair follicles. I started off noticing my eyebrows getting patchy looking. This is what caused me to notice. Then the dermatologist told me I had FFA. Also, that my hair that I lose will never grow back. I was like WHAT!!!! Oh no, oh no!!!! To me a woman's hair is part of her femininity. Now, you can get hair transplants but you will have to wait until your hair loss burns out and you are clear for at least 2 years. Keep using the steroid on your hair line. You want to keep the inflammation down and calm. If it gets to a point where you want to look at wigs there are a couple of companies that have really natural looking wigs and toppers. Moramode is one and Nuola is another. They run about $2000.00. These are custom made to your head. There are a lot of other things out there as well. I'm 59 and I have fine straight as a board hair. It's also thinning due to menopause. I have done a lot of research over the years on the medical side and cosmetic side. If I can help, don't hesitate to contact me. Best wishes. You still look great! Take it one day at a time.
I have chosen to not treat with steroids. I will get a wig when and if it becomes an issue. Thank you for all of your advice.
I have had the same thing happen with loss of hair - identical! I’ll try to follow this thread and will do research as well. Today I start my combo treatment for my precancer on my face. That’s how I stumbled on your videos. Thank you!
I feel your pain I gave up going to dermatologists because there is no cure they don't care. I have been with it since 2018 and it's overwhelming. I have lost most of my hairline I can't afford a 2000 wigs and it's depressing . The journey is long and hard. I stay home never go anywhere. The last dermatologist told me there are a few medications but they can cause blindness. I'm type 2 diabetic like I want to heat that. Idk I feel your pain at 100% prayers sent
I was diagnosed with FFA at the age of 38. I also had telogen effluvium (generalised thinning) at the same time!. The good news is that the progression of my hairloss has been slow and steady and I only started wearing wigs last year at age 67. I have very little hair left now. I don't have any problem with wearing wigs (there are some fabulous styles) except that I find them a bit hot in summer and they are expensive! I never found any of the so called remedies worked - tried Minoxodil, steroid lotions etc etc.
I find this encouraging; thank you for sharing. I have decided not to treat this and just deal when it happens.
❤❤❤you are so sympathic, dont worry ,i got the same diagnosis,after years i found out for myselve that i had always much negativ Stress, but i learnd to love myself,and my Haar is coming back,Importen is vitamine d3 plusk2 Magnesium, zinc ,and have a good look to meyself,i wish you allways the best, best wishes from germany
Thank you for your encouragement. I have decided not to treat the hair loss and so far no more has happened.
I had already noticed that spot on your nose and thought you should be treating it more aggressively and for a longer time with the chemo cream than the rest of your face. You can keep spot treating with the combo cream and yes it is effective for bcc!! I would def do that instead of Mohs.... Aldara cream is also effective against BCC and SCC.
For a long time I thought that sore was from my prescription frames and I had to switch to readers at rhe end of my nose to keep it from opening up. I had the mohs and the scar is not visible now.
I really like your videos. I was scheduled today for nasal surgery May 22. I had CT and he thinks it is most likely inverted papillon. They won't know til they get in there. Your videos give me hope!!
I’m sorry I am just now responding; I see this comment from my studio app as not responded tab. How are you since your surgery?
@@Kathysvlogchannel It ended up being cancer. I had 2 surgeries. Last one was endoscopic medial maxillectomy. That was last June 30. Been good since. Dealing with the after effects of vertigo now.
@@JRSWANDOG68 Oh my; I hope they got all the cancer! I will say some prayers for your vertigo now!
Hi there and thank you for sharing your video. I have this same condition. However, my dermatologist could not pin point the cause. I just recently discovered that some silver tooth fillings that I have in my mouth were not done properly and the mercury leaking into my blood stream could be a direct cause of my alopecia. I also researched this online and saw that there a significant studies that show the link between hair loss and mercury fillings.
Wow this is interesting; thank you as well for sharing your research.
Could the cause be from the chemo face cream????
I've been putting mometesone fuoroate on my scalp for 5 years now 5 times a week with weekends off. Just gotta keep doing it to keep the remaining hair. Big patch missing in the crown with FFA in front and on sides but at least I still have hair. I got real stressed out after breast cancer at end of 2018, which I am told is what has made the lpp worse. It's stable now but I can tell you if I looked good bald I would shave it all off. BALD WOMEN ARE BEAUTIFUL! LOVE TO ALL AND GOD BLESS.
I have not noticed anymore hair loss…so far. I decided not to treat with meds. I’m just planning to invest in a wig if/when I may need it.
Kathy please come on here a vent and some how you will find away to get through these highs and lows.
Thank you for understand my need to vent at times. I appreciate the support. So far - I have yet to treat the hair loss and I have been able to hide it with makeup contouring.
I was just FFA and it started when I was only 28. I feel your pain. I've just started several treatments, both topical medications and pills. Time will tell if it helps. How are your symptoms at this point in time?
My symptoms are really only my hairline and above ear (sideburns) have diminished. I’ve not noticed any hair loss or further receding and have decided not to use any treatments. I will just buy a wig if ever it seems to get worse or bother me.
Hallo ❤
Würdest Du mir sagen mit welchen Arzneimittel Du behandelt wirst?
Ich bin auch betroffen.
Was genau machst Du dagegen?
Liebe Grüße und alles Gute
Petra
English translate:
“Hello
Would you tell me which medicines you are treated with?
lam also affected.
What exactly are you doing about it?
Kind regards and all the best
Petra”
I was prescribed a steroid cream, however, I decided not to treat it.
Did you experience any itching or rashes along your hairline initially when you started to lose your hair?
I did and still do from time to time experience itching. Not ever a rash, but sometimes a tiny red sore. I never associated it with hair loss because I also have actinic keratosis. I never see the hair loss, just slowly noticing my hair line went back farther. I have yet to worry or do any treatment yet. I plan to invest in a wig if ever I feel necessary, but I’m hopeful that won’t be the case for at least ten more years.
I was watching your video on your ordeal with the fluorouracil chemo cream. I was looking for the video that showed the outcome when I ran across this new video of yours! First of all my heart and my prayers go out to you. Second of all I could’ve been making this video for myself. Like you I’ve been using a dermatologist and went to a new one and they found an itty-bitty little barely there pinhead pimple under my right eye and I was told it was basal cell carcinoma! I was shocked that the previous dermatologist here was treating my face and didn’t notice it. So I am starting the chemo cream for the pre-cancer cells all over my face and I had a biopsy which thank the Lord came back negative. So my prayers are with you that yours come back negative also. In 10 days I have an appointment with a dermatologist for my hair because I am also losing and thinning hair! All I can say is be strong. Believe and trust in the Lord! Ask everybody to say a prayer for you and your Health and healing! God bless you!
Prayers are so powerful! I’m so glad you commented and I think sharing is caring! Let’s keep in touch!
@@Kathysvlogchannel I’m curious if the dermatologist did bloodwork on you. There’s many causes for losing hair such as hormonal, thyroid etc.
@@vickyb9900 no test or biopsy for FFA; just looked at my forehead and made the diagnosis and prescribed the topical steroid cream. I’ve continue to research on my own and just joined a fb support group for FFA too.
I got diagnosed today. 😢
Hi. I was diagnosed 5 months ago and going through treatments. I loved to share ,
Maybe there’s something your using , I’m no or vise Vera .
Alopecia or not you're beautiful and maybe the Lord is using that to show you.
just got diagnosed with frontal fibrosing alopecia.... how is it going with you.. any updates ;)
I have chosen not to treat it. So far I am only noticing hair loss above my ear/side burn and my forhead is same. My hair style hides it and I’m not having any rash or itching, so just choosing to not do steroids. I am taking biotin supplements.
@@Kathysvlogchannel very good 💝 thank you so much ;)
I wonder why women are so upset when they lose some hair but think it hilarious when it happens to a man
I personally do not think it is hilarious when anyone, a man included, loses hair. My husband is bald and I know it affects him. I personally strive to make certain he knows I am still completely attracted to him.