Geri
  • Female
  • Ridgewood, NY
  • United States
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Latest Activity

sampeckard replied to Geri's discussion FFA and common beauty aid ingredients in the group Frontal Fibrosing Alopecia
"Thank you for sharing this! Very glad that you're doing better now! I also want to share some ingredients that you should watch out for in nail polish. The list includes formaldehyde, toluene dibutyl phthalate. You should also try to avoid…"
Jun 7
Toby replied to Geri's discussion FFA and common beauty aid ingredients in the group Frontal Fibrosing Alopecia
"I showed the list of Massachusetts General Hospital to my dermatologist. She said Methylchloroisothiazolone is in a lot of products. The FDA, Canada and Europe have set a limit on how much can be in a product. It was in my body wash, shampoo,…"
Aug 16, 2019
Donna replied to Geri's discussion FFA and common beauty aid ingredients in the group Frontal Fibrosing Alopecia
"I thought I was doing good washing my hair with baby shampoo this morning.  Seemed like a lot of hair loss afterwards!!   I also checked Green People shampoo online,  that’s so expensive.  I think it was $24.00 for 6.7oz."
Aug 7, 2019
pauliegirl liked Geri's discussion FFA and common beauty aid ingredients
Aug 6, 2019
Diart replied to Geri's discussion FFA and common beauty aid ingredients in the group Frontal Fibrosing Alopecia
"My dermatologist responded. She said they have not considered adding phototherapy due to the number of treatments needed close together and the distances her clients have to travel. (We live in the middle of the mountains of Colorado & nothing…"
Aug 5, 2019
Diart replied to Geri's discussion FFA and common beauty aid ingredients in the group Frontal Fibrosing Alopecia
"Hi Geri Thank you for posting this. I have been getting rid of lots of products that were commercial and going with simple ingredients for a couple years. It is very helpful to have this list. I sent it to my dermatologist. I also asked her about…"
Jul 29, 2019
Toby replied to Geri's discussion FFA and common beauty aid ingredients in the group Frontal Fibrosing Alopecia
"I just went shopping and took this list of chemicals and looked at all my old favorite brands that I used to use daily before I was diagnosed with FFA. I used these products daily for years. Here is what I found. Methylcloroisothiazolinone - 26…"
Jul 27, 2019
Toby replied to Geri's discussion FFA and common beauty aid ingredients in the group Frontal Fibrosing Alopecia
"Limonene and linalool is in my kitchen hand soap. Something awfully close to methylcloroisothiazolinone is in my dishwashing lotion. I did switch to chemically safe shampoos, body soaps, and make up some time ago. Still need to check makeup. Thanks…"
Jul 27, 2019
Toby replied to Geri's discussion FFA and common beauty aid ingredients in the group Frontal Fibrosing Alopecia
"Geri,  Thank you so much for sharing the list of chemicals to avoid. I will check all my products to see if they contain any of these chemicals.  Seems Ike the doctors are thinking FFA is caused by some chemical, just difficult to…"
Jul 27, 2019
Miss Mymble replied to Geri's discussion FFA and common beauty aid ingredients in the group Frontal Fibrosing Alopecia
"Im confused. Blue Lizard sensitive contain Titanium Dioxide. As I understood that’s an ingredient to stay away from?! Wonder why they recommend it or if the “guideline” has changed. Oh it’s sooo confusing..."
Jul 26, 2019
mc replied to Geri's discussion FFA and common beauty aid ingredients in the group Frontal Fibrosing Alopecia
"Thank you for sharing this!  I too have been seeing a doctor at MGH for FFA.  I saw her a few weeks ago and she said I'm probably in remission.  I'm going to keep using the Tacrolimus every so often just to be on the safe…"
Jul 25, 2019
Miss Mymble replied to Geri's discussion FFA and common beauty aid ingredients in the group Frontal Fibrosing Alopecia
"To answer my own question about suggestions for products.  It looks like the brand Green People and their line Neutral will be safe to use; facial moisturizer, shampoo and deodorant etc. I have used some of their other lines and liked them. So…"
Jul 23, 2019
Miss Mymble replied to Geri's discussion FFA and common beauty aid ingredients in the group Frontal Fibrosing Alopecia
"Thank you so much for the info Geri. And congrats on positive progress! So good to hear. And wow, you’re so lucky to have a derm who actually advocate for you. What a blessing!! :) What  kind of phototherapy are you getting? If you have…"
Jul 23, 2019
Geri added a discussion to the group Frontal Fibrosing Alopecia
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FFA and common beauty aid ingredients

Hi,I am having phototherapy treatments on my hairline and eyebrows and I am seeing improvement (inflammation/red follicles clearing and some hair growth).   I am seen by a local dermatologist whom I love.  She is an advocate for her patients.  It was difficult getting insurance approval. Last month I visited Mass General Hospital Dermatology H.A.I.R (Hair Academic Innovative Research Unit) which is in Boston to see if there was anything else I could be doing.  This unit is currently conducting…See More
Jul 23, 2019

Profile Information

Relationship Status:
Married
About Me:
Diagnosed with LPP and FFA in November. Coping and trying to make it stop....
Do you have alopecia?
Scarring alopecia
Are you age 18 or older?
Yes - I am 18 or older

Comment Wall (2 comments)

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At 2:42pm on January 18, 2014, Cheri A said…

Hi Geri.  I have Alopecia Areata.  I've had it for about 10 years and I've lost almost 75% of my hair.  The only side effect I'm experiencing is occasional headaches.  Some people get stomach upset but I haven't experience that. You have to have your kidneys monitored carefully on this drug. Some people get kidney damage. My blood was just tested on Thursday after being on the drug for 4 months so hopefully my results will come back OK.  My hair is growing back in so happily so I really don't want to go off the drug. My specialist expects that I will have full hair re-growth after 1 year and then he will wean me off the medication. His experience is that the vast majority of people he has treated have kept their hair after ending the treatment.

At 8:39pm on January 16, 2014, LeslieAnn Butler said…

Hello and welcome, Geri!

How are you today?

Leslie Ann

 
 
 

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