Alopecia World
www.alopeciaworld.com
I learned more from this site than I did from a "qualified physician"
It's so interesting that since I've been on this forum, I've learned so much more about alopecia areata, universalis, totalis, etc. from the information and observations from the members on this site. I learned about the disease and, over time, how to deal with it through this forum.
I think back on my friends, as well as myself, who had sought answers from physicians because, well, they were physicians. They're supposed to be smarter than us, right?
Nope. I was given salicylic acid, antibiotics, cortisone creams, a couple of sessions of painful (useless) injections, etc.
My cohorts went to 4 to 5 different "derms" each of whom did biopsies, and not one of them could agree on the course of action for the same problems. Most of the time, the biopsies kept coming back with different results: Mostly negative.
Then the thyroid tests, liver panels, more tests...each coming back with different results.
One of them finally "caved" because her MD "strongly recommended" a hair transplant procedure.
And it failed.
I learned in the medical field that most of the time you're referred to surgeons because doctors and surgeons are "good friends' as long as they wash each others hands.
Believe it or not, folks, I learned more just reading, researching, and experimenting on my own and on this forum. Learning what to do and what NOT to do regarding hair growth, but, most importantly, I learned to stop running hither and thither to different physicians for answers.
Just because they have an MD doesn't mean they are smarter than you. I think in many cases it's because they're more "privileged" than you.
And that's it.
Replies to This Discussion
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Permalink Reply by Rose on
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Oh so true! This site can save you money and endless time/disappointment from needless doctors and tests. Well said..well written. For me, having AU for more than 20 years, the chances of regrowth are nill. Knowing that, I skip remedies other than acceptance and finding good hairpieces.
I really want to do the microblading..to have better looking eyebrows, anybody out here know of a good place to have this done in the Portland OR or Vancouver WA area?
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Doctors know jack shit when it comes to most autoimmune disease.
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Permalink Reply by Stars-r-Aligned on
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Yup, so true
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Thank you! I totally agree. I took my son to various doctors and tried every imaginable remedy and everything has failed. I'm sure if there was a magic potion out there this whole site would be flooded with the answer and everyone would be taking it. He's currently taking a handful of supplements each day and they haven't helped. Hopefully he is healthier but still has no hair growth
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Molly, Rose and friends on Alopecia World,
Magic potions don't exist but if you have all researched "DHT", that's the main cause of hair loss, hair thinning, hair aging and baldness, alopecia. Please read "The Science of Monat" for your information and just see if it makes good sense to you.
Monat Global is an amazing 2-year old company backed by one of the world's reknown scientists, Jamie Ross. You can google him too. Do some research. I had a horrible bout of baldness for 4 months from coming off of 6 years of using Monixidil. I cried and wanted to never go out. I wasn't bald but it was a good start.
A friend introduced me to Monat hair care and I have been growing my balding spots back going on 8-9 months. My hair is not perfect but my hair stylist said he sees hundreds and hundreds of tiny new hair growth. My hair looks and feels better and thanks to the Monat products, I am a believer. I turned Market Partner for Monat and I don't look back. I have been helping cancer patients with little or no hair and my intentions are to keep on helping others..
If you do nothing else, read the SCIENCE OF MONAT. They address the hormone DHT that kills the hair follicle, the bulb and releases the hair. I think you will see this as a venture in getting your hair, scalp and follicles back. Ninety (90) days results are amazing.
This is the SCIENCE OF MONAT:
http://barbaralinzey.mymonat.com/science/index.html
The "MONAT" before and after pictures have to be submitted by Market Partners like me and the photos have to be a customer. See:
https://www.bing.com/search?q=monat+before+and+after+pictures&f...
Let me know if any of you are interested in more information. I'm here.
Barbara
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Permalink Reply by Debbi Fuller on
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They don't know everything. Some are truly honest and will tell you the truth about alopecia and that there is no CURE, only treatments that all have side effects. Those of us who have been dealing with it for the past 20 to 40 or more years have a huge volume of information that the average doc just can't possibly know unless they make alopecia their sole focus. Most of them know a little bit and they know about the treatments but that's about it. Some are very knowledgeable but it's hard to find one and even if you do, he or she will tell you mostly what they can't do. Because there isn't much. This forum is full of incredibly smart people who mostly have learned to cope very well with a difficult disease.
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Permalink Reply by Suzie on
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Debbie I absolutely need my RA medicine to live my life. Inflammation in the joints is excruciating. I've tried to do all natural products and supplements only to find nothing worked for me. If you ask anyone with RA they will tell you that we hate taking the medicine but when you can't even walk, work, sleep or even eat (cause I have it in my jaw) and medicine is the only thing that will help ease the pain, then that's what we have to do.
If I have learned anything throughout my life it's that unless you are experiencing the same thing someone else has then you have no idea they are going through which is expected. RA flare up are very very painful and I'm thankful there is medicine available today unlike years ago. I want my quality of life to be the best it can while I am alive. This forum is to support each other in our choices of treatment and not criticize.
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Debbi,
Please review some of my replies to the alopecian ladies and gentlemen on this group. The products that are in Monat are naturally based and address the DHT that kills the hair follicle (and bulb). The bulb is poisoned by DHT and releases the 1-4 hairs in each bulb. The Monat products address killing the DHT, making the follicle and bulb healthy. When the scalp, follicles and bulbs are healthy, guess what? Hair regrows.
These are some of the naturally based ingredients in Monat products that regrow hair. It may take 30,60, 90 but you will have hair regrowth.
PROCATALINE™
Features Pea Extract, a rich source of secondary metabolites, which deliver healthy nutrients to promote hair growth, reduces the production of the (DHT) hormone that contributes to hair loss, plus powerful antioxidants to combat premature thinning, as well as protect color and shine.
Benefits:
-Maintains a healthy environment for hair growth.
-Preserves the hair follicle.
-Aids in prevention of hair loss.
-Helps protect against environmental damage.
-Protects the natural pigment in the follicle.CRODASORB™
A powerful formula that packs an intense defense against oxidative stress, protects from the sun’s damaging rays and resultant UVB damage, Cordasorb™ also preserves hair’s natural pigmentation and keeps strands stronger and locks in moisture.
Benefits:
-Protects natural and synthetic coloring as well as gray hair.
-Absorbs high amounts of UVB and UVA light.
-Penetrates the hair, allowing it to protect both the cuticle and the cortex.
-Helps to smooth the cuticle for less damage and breakage.If you read the Science of Monat, you will realize this hits the nail on the head. It's amazing.
Let me know if you want further information. I am sharing with this group because I have seen the products work. My sister has cancer and she has chemo every Wednesday. I am helpng chemo patients and my market partners and I are giving educational workshops in a retirement community monthly. It's all about knowledge. Doctors do not know everything.
http://barbaralinzey.mymonat.com/science/index.html
Be hopeful,
Barbara
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Permalink Reply by Grandmajoy on
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I am now 74 years old. In April of 2015 I lost all of my hair: going from a full head of hair, thick eyebrows and long eyelashes to nothing in 6 weeks. I originally saw a dermatologist, who determined it was Alopecia Universalis. He sent me to several specialists including a hematologist, rheumatologist, and an endocrinologist, each specializing in different autoimmune diseases. I knew I had hypothyroidism but didn't know it was Hashimoto's until I saw the endocrinologist.
Late last year I asked the Rheumatologist if when the medical profession is unable to determine the cause for a health problem, do they randomly label it as Autoimmune Disease. His response was very refreshing because he said "Yes."
During the past 18 months I have discovered a love for hats and scarves. I have both winter wear and summer wear. BALD IS BEAUTIFUL
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Grandmajoy,
Read this about how DHT kills the hair follicle (bulb). We have products that regrow hair and many alopecians have grown their hair back. Doctors do not know everything.
http://barbaralinzey.mymonat.com/science/index.html
See what you think. Monat is an amazing company and these products are truly a gift for cancer patients who have lose all of their hair, people who have alopecia. There is no need to settle and never grow you hair back.
DHT is the hair follicle killer. The Science of Monat addresses this. I hope I am not overstepping but I hate seeing everyone on here suffer. There are answers and naturally based products that contain Capixyl, Red Clover, etc have proven to work. Do some research..... let me know if you want to discuss.
Barbara
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Unfortunately, some doctors DO know more than others. For example, my mother had scleroderma (she had it for 15 years - most people only live up to 7 years with it; and she eventually passed from the disease). This is an autoimmune disease as well and was diagnosed with it when she was only 45 years of age. Her primary care doctor sent her to a rheumatologist and he did NOTHING. Her skin was tightening up so much on her neck that she could hardly swallow. My sister's father-in-law knew of a rheumatologist and immediately after seeing him he gave her a proper diagnosis and after testing, found she was eligible (she was at a certain stage of the scleroderma) for a procedure similar to dialysis, which she had to get once a week for a few months. That saved her life....she was able to live for 15 years with that awful disease. Some doctors, who are specialists, do know more than others or are willing to find out and do research.....but those are diamonds in the rough! Autoimmune diseases can be complicated and just like anything else, some methods of treatment work for some people and not for others.
I developed AA when I was a 15 and from what I remember (I'm 51 now), it was mainly the nape of my neck. I remember you could see right through the back of my hair. I was devastated and my mother took me to see our family physician. He had no answers.....luckily for me it grew back on it's own....no injections, supplements, or anything because we didn't know what it was. Fast forward to my 20's (26 to be exact). I had my second child and almost immediately I developed RA, which was bad until 4 or 5 years later; it became so unbearable I had to start the newest biologic medicine - Enbrel. I have since been on Humira, Orencia and now Xeljanz (to help with both the AA and RA). I truly believe the Orencia caused my AA the second time around because it suppresses the immune system and since I felt so good after taking it (I was exercising and everything), that I decided to wean myself off of it. BIG mistake! It was a slow process for me.....didn't realize my hair was coming out until my husband noticed a bald patch after showering; then months later another patch, and then another. My hairdresser said it looked like Alopecia and I had no idea what that was. I googled it and that was my "aha moment". This is what I must have had when I was 15! I tried the injections from a dermatologist and honestly, it helped with some of the patches, but not all of them. My hair thinned so bad. Once again, research and more research. I was tempted to see a Dr. David Clark in North Carolina, but I learned insurance would not cover all of the testing he would do. He is supposedly a specialist who deal with autoimmune diseases and can heal you naturally. I was so torn and decided to try the Xeljanz (3 months in) and I had to break down and have extensions put it to help cover the patches. I am hopeful that I will not lose any more, but as we all know, there are NO guarantees. If I do, I am certainly going to try Dr. Clark because then I will know if I have exhausted all of my options......Try and Youtube him if you get a chance. What blew me away with him is that he stated if you had alopecia areata when you were a child at a certain age, then you werelikely going to develop another autoimmune diease and for me he was right on with the type of autoimmune disease I would develop - RA!
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This isn't exactly news. Most people with AU or AA have other autoimmune conditions. The tend to be on a spectrum. I have AU and Hashimotos. Others have AA and eczema or RA or asthma or vitiligo...............it goes on and on. We all KNOW this. What we DON'T know and no one else does either, is a cure. My best advice is to take good care of yourself and stop trying to cure something that currently has no cure. IF you want to subject yourself to a drug with side effects that may or may not grow your hair and when you stop the drug want to watch your hair fall out again, then go for it. I'm happy with AU and I'm happy to wear (or not) my prosthetic hair and I don't want anything to do with drugs that aren't totally necessary to keep a person alive and healthy.
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