Alopecia World
Where acceptance is all there is!
Search Results - insurance wigs
- Comment on: Topic 'squaric acid'
- to do the treatment from 6 months to a year to actually see if it will work, but I had had enough. I got a treatment once a week, and by my third one I thought I was going to crawl out of my skin because of the itching!!! But as your body gets used to it and you get more and more treatments, the itching lessens...it never stops...but it lessens. With my experience, I had to keep it on my scalp for about 24 hours, and I couldn't wear my wig the day it was applied. Okay, so does it work? First of all you have to make sure your body will react to it, and then go from there. For me it took about 2-2 1/2 months to start seeing hair growth, and at this point I had probably lost around 60-75% of the hair on my scalp. The hair continued to grow as I continued to get the treatments, but there were still some bald spots that refused to grow. And then, while I was still getting the treatments, I started getting NEW SPOTS in the new hair growth! The nurse at the dermatologist's office told me that people don't usually get new spots while they're still doing the treatment...if new spots occur it usually happens after you've achieved total new hair growth and you've stopped the treatments (some of my hair has also grown back white--it's supposed to be light brown). And now, about 2 months after I've stopped treatments, the new hair that had grown back from the squaric acid is really starting to fall out, even more than before when I was still getting the treatments. I've read that the acid only works when you're actively receiving the treatments, and then a lot of people lose their hair when they stop. It was not a very fun experience, but I think it does work for SOME people. Another woman (who had lost all of the hair on her scalp) who was doing the squaric acid treatments at the same dermatologist as I was did the treatments for 4-5 months, had complete new hair growth, and then started getting new spots about 1-2 months after she stopped the treatments. I had gotten to the point where I HATED going to the dermatologist for my weekly appointment...the itching and burning is not fun at all, but for some people it may be worth it. Sometimes they applied too much of the acid and my head not only itched, but BURNED! And they had to order the acid from California and it would cost around $200 for a new bottle (not covered by my insurance) because they had to ship it overnight in dry ice. I had to pay the $200 twice. The doctor then recommended putting me on a pill called Cellcept because she felt like we were behind in treating the disease, but I opted not to. There were side effects and such that just weren't worth it to me (such as birth defects if you get pregnant, etc.). ANYWAYS, I've officially written a book to a very simple question...SORRY! If you wanna know more about my experiences feel free to message me. Good luck! :)…
- Added by Kristal at 9:39pm on June 17, 2008
- Topic: New York AA Drs?
- rise. I do also have a few dark pigmented skin patches for 1-2 years on few spots on my body that neve responded to medications--now thinking this is related to autoimmune aspect in some way perhaps. Im beginning to wonder if i have AGA as well as AA--if so both so far are mild. I present as diffuse but jus top of scalp. I feel like i have nice DR but i am unsure if my case is somewhat unique or unusual. My Mother has hair loss--the typical look of advanced female pattern baldness--shes not bald but might as well be she wears a wig---but she looks look like advanced AGA..she FINALLY went for a biopsy this week mostly to aid in my journey shed any genetic factor. My Mother has several autoimmune illnesses hypothyroid, diabetes (although i think initial onset was weigh related). Also i was diagnosed as very low ferritin i was 12 for at least 3 years we know of..Dr found on old blood work..So i have been under his supervision supplementing all SUmmer--i am not around 60 goal is above 70...he explained this 'helps' hair to grow not that it would reverse anything going on genetically. I am looking for NYC area experts. I dont mind paying but the consult with Dr Shapiro--is crazy for over $800 just to meet him--No thanks. That alone tells me a lot about him lol i am also suspect of Dr who 'dont take insurance'. I do have an appointment with a Dr at Columbia Dr Mckay Wigans. Also trying to get my Dr to refer me to a Dr Costarellis--although this is when i though it was AGA now that i have AA i am very lost. Im curious if anyone else has it like me just a slow steady shedding but not 'round' circles...and if anyone has it pretty defuse on part of the scalp (top of crown) but not other areas? I had a biopsy it just came back AA--If it was the scaring kind would hat have been noted? I just dont so far present physically as AA. Its weird. I they are patches they are very small 'netting' pattern kind of patches. also i know people get vitiligo but anyone get 'brownish' skin patches also have dry eyes since late 20s and i have 'chicken' skin on arms since mid 30s Im 45 now i would say i noticed some mild hair thinning first around 37-39 I have had some eyebrow 'shed' that seemed like a lot and maybe a few hairs 'missing' in brows on and off for past year but not lost not cosmetically different. Help LOL…
- Added by mcat111 at 10:55am on October 6, 2016
- Topic: My Stanford trial experience, part 2 (Xeljanz)
- at Yale several months ago, he finally got back to me last December to inform me that two doctors at Stanford University are conducting a trial to hopefully replicate his findings. I jumped at the opportunity and got in touch with Dr. Milene Crispin at Stanford. Working with Dr. Justin Ko, they are conducting a trial where participants take 5mg of Xeljanz twice daily for 3 months. Then, we are monitored for 3 months after the drug is finished to see what happens. Participants in the trial are not privy to results of other trial members, but both doctors have told me they are definitely seeing some positive results on not only patients with AA, but AU as well. I struggled with a 2-year battle of AA back in 2007-8 and then went into complete remission for three years. All my hair grew back. However, I relpased in early 2013 following some very stressful times and a reoccurrence of mercury poisoning, and over the course of that year, watched my hair fall out completely. By January 2014, I was shaving my head and turning to wigs. In June 2014, I began to progress into AU, where I am at to this day. I lost everything. I did my research on Xeljanz and all its potential risks, and I talked to two friends who have been on JAK Inhibitors for RA (not Xeljanz because it is so new) for the longterm (years), and they are not dropping dead of cancer. There are millions of RA patients out there on JAK Inhibitors, and as long as they are being responsibly monitored by their doctors monthly, I believe the risks are not as bad as the literature warns. Certainly, everyone is different, so I am not going to elaborate on the odds of side effects. But my medical history and bloodwork showed that I am a good candidate for giving Xeljanz a shot. I don't know if any of you have seen them, but there are ads for Xeljanz popping up in magazines. Pfizer is really banking on this drug. So here is where I am as of this date...I flew up from Los Angeles to Stanford on 01/14/15 for my diagnostic appointment in the trial. Dr. Ko took photos of my scalp and nails, did a small scalp biopsy, walked me through a ton of paperwork, sent me to the lab one floor down to have blood drawn, and sent me home with a co-pay card from Pfizer that will cover a total of $8,000 over the three-month period that I will take the drug. Yes, you read that correctly. Xeljanz costs approximately $3,000 for a one-month supply! Thus, I will be paying $1,000 out-of-pocket over the course of this trial. It is worth it to me to see what happens. I have to pay for my own plane tickets and rental cars during the trial because I must fly up to Stanford each month for 6 months total to be monitored. Thus, if you are considering this trial (or the one at Columbia University) understand that it will cost you. TODAY, I finally got the Xeljanz in hand after 3 weeks of winding through more red tape than one can imagine possible. The doctors gave me guidelines on how to get the drug using the co-pay card issued from Pfizer for this trial, but depending on one's health insurance company, the process can become one, big cluster-fuck! It certainly was for me. I have Healthnet PPO, just so you know. Now, you may wonder what my health insurance has to do with this since they will NOT approve Xeljanz for AU (NO insurance will because it is not FDA approved for Alopecia). However, pre-authorization is necessary to begin the trial and then to get the ball rolling with the pharmacy. Before my first trip to Stanford, I had to get my local dermatologist to send a fax to Healthnet telling them I was flying to Stanford to "receive treatment for AU that is not available to me here in Los Angeles." I was told NOT to have my dermatologist state it is a "medical trial." That could delay things. I got the pre-authorization to go do an out-of-network office visit up at Stanford. That was the easy part. The logistic nightmare came when I then tried to get the drug with Pfizer's co-pay card. I will not go into all the details here or I could write a novel. I will just say that the ONLY pharmacy that is getting the process completed and getting Xeljanz into trial members' hands is the CVS Specialty Compounding Pharmacy. You submit your RX to your local CVS, and they must send it off to this compounding branch (it has a 1-800 number) where they process the prescription. It took three weeks of back and forth between more pre-authorizations needed from Healthnet, faxes from the doctors at Stanford, getting the co-pay card processed, and ultimately getting the drug mailed to me (or your local CVS where you can pick it up). It took a lot of effort, but I not only got the drug, but I paved the way for future trial members by getting a representative at the CVS Specialty Center to send out a company-wide email memo so any representative getting the prescription and co-pay card should now know what to do. I wouldn't bet on it, though. I spoke to many folks on that 1-800 number who had no clue how to get the Pfizer co-pay card processed. HOWEVER, if you are reading this and decide to partake in either the Stanford or Columbia trial, feel free to email me at the address under my name at the end of this post. I am happy to talk you through the step-by-step process required for getting the drug in your hands. I don't want anyone to go through the shit-storm I battled. So, now I begin the trial in earnest. I took my first pill today. I will continue to post throughout the 6 months that I am on the trial to document my progress (if I have any). Who knows what will come out of this? Maybe nothing. But, I feel very strongly about supporting the Alopecia community by participating in this trial. It is outrageous that there is still no reliable drug available for our disorder, and the FDA must be convinced that JAK Inhibitors such as Xeljanz DO work for some Alopecia patients. Currently, Pfizer is trying to get Xeljanz approved for psoriasis since the case study patient at Yale saw dramatic improvement to not only his RA and AU but severe psoriasis. Pfizer is heavily advertising Xeljanz in the magazines for RA because that is the only condition it is currently FDA approved for. But, I learned that Pfizer lost $114 million last year on Xeljanz because there were simply not enough RA patients willing to switch to this new drug. Pfizer is very invested in Xeljanz as a future cash cow. That is one reason they are providing the $8,000 co-pay coverage for trial members! They are hoping to get their drug FDA approved for more than RA or they will never make money on it. This is a very positive sign for the Alopecia community, I believe. We trial members are the pioneers. Again, if you are reading this and are interested in the Stanford trial, call Dr. Milene Crispin ASAP at 603-667-1310. When I visited her offices on 01/14, there were about 20 trial members. They will cap the number at 40. I know Dr. Crispin has been bombarded with emails. So don't delay emailing her if you are interested. She will contact you by phone and talk you through the trial conditions and find out if you meet the first qualifications to come to the clinic for the first consultation visit. If you are already in the trial and are trying to get through the red tape to get the drug, email me and we can exchange numbers, and I will talk you through the process. Wish me luck! My journey is finally under way! --Susan …
- Added by Susan McAdams at 12:57am on February 5, 2015
- Comment on: Topic 'Regimens'
- istic nurse, looking for answers. Then I noticed they would kinda cycle, fall out but then grow back, so I settled down a bit, just used eye shadow when I had patches. About a year ago, I noticed my hair thinning along the sides and front hairline. When I was at a different dermatologist at the practice I was seeing I mentioned it and she was like I think its FFA. She referred me to Dr. Shapiro in NYC but when I found out it was almost 900 for a consult without insurance, I almost didn't go but I ultimately did luckily (because I really like him). I also went to a Dr. Pappert in NJ that did take insurance. Dr. Pappert did the biopsy and made the diagnosis of FFA. I now see them both but terrified of taking oral medication because of the side effects. I have 2 young kids and a husband that says he doesnt care if I lose my hair so I am VERY reluctant to chance the side effects. SUSPECTED CAUSE: I have been under some stress when this started, so my guess is that this triggered it. At point I was taking lexapro and I wonder if that could have lead to it as well. MEDICATIONS: I am tempted to try Doxy (but only short term with lots of probiotics and courses of Nystatin to counter the killing of all the good bacteria in my stomach) BUT, I did take it for 10 days a few months ago for an infection and I feel like I had more hair shed during that time. When I google Doxy and hair loss, a lot of comments come up about it so that makes me very concerned that taking it for me, would have the opposite effect. VITAMINS/SUPPLEMENTS: (when I remember, so it fluctuates) I take daily, 2 fish oil, 2 tumeric, Vitamins D and B, Culterelle, Brocomax, Biotin, Iron, Vitamin C. In my daily smoothy, I have a powder Fiber, Mangostien, Aquai. TOPICALS: I have both Clobetesal and . I am afraid to use the Clobetesal because Dr. Shapiro has found that is causes veins to show on the face. When I use the other that he prescribed, I tend to think I have more shed after using it. Since both doctors are not optimistic it will be enough to stop regression, I don't use it too much. I have used Lattisse on my eyebrows and hair line. I am not sure if I notice a big difference with my brows but felt as if I see new hairs on my hairline. I recently ran out so I've been about a week without it while I wait for the new script. Not sure if I am noticing a decline in the meantime or if I am in a slight panic. Also, not sure if using it is helping or causing more to fall out because I think I have noticed more shed since using but I still see the new sprouts... tuff call. INJECTIONS: I have done these. 3 months so far. Have 2 additional months scheduled. Dr. Shapiro did first, 30 injections, 1 cm back from my hair line, in a headband arching from behind one ear, over to the next. The next one I went to my other dermatolgist who was out that day but a Resident Physician did it and did not follow what Dr. Shapiro had sent. She only did about injections and went as far as 2 inches back in one spot. I am a big believer in not injecting the hairline as you will get visible indents and that hair is already gone. However, I was so upset that this one went so far back. So, I made my next 2 appointments with Dr. Shapiro even though I have to pay out of pocket. I did notice a lot of shed a couple of days after this last, 3rd injection but not sure if from that or that I cheated a little on my diet that weekend... As for dents, i feel some bumps in my head. I am not sure if these are the indentations I am feeling, however, they are in my hair so not visible. I may reconsider after my next (4th) appointment to see how long I should continue. DIET: I am now on the Paleo, Auto-Immune version diet. This means no carbs, no dairy, no tomatoes, no eggs, no nuts (although I cheat with almonds a little), no alcohol - I cheat a little once every week or two, this one is hard :(... I do think the diet makes a huge difference. First, I dropped 10 pounds in 2 weeks. Also, I feel so much better when eating this way. If I slip, I get tired and cranky. If I cheat, I feel like I can notice hair shed too. HAIRCARE: I use prescription Nizoral (although red and called something else.) I do this every 3-4 days. I also use Just Natural Organic Loss shampoo and conditioner. I wash every other day, alternating between the two. I have also noticed that my frizzy hair is not wavy. I think its the organic shampoo. I also color my hair but have been going longer and longer. COPING: Friends and husband being encouraging and saying no big deal, trying not to worry too much. Ordered lots of headbands getting ready. Ordered one wig so far and will order more. SUCCESS: Not yet. Fingers crossed! …
- Added by Sam to Frontal Fibrosing Alopecia at 11:49pm on October 30, 2013
- Blog Post: Recovering from DEEP DEPRESSION. My hair loss chronicles
I have looked under the bed, I have checked my pockets, I have searched high and low and my hair was nowhere to be found. You see, since I was 21 I have been losing my hair and have done…
- Added by SMC at 4:46am on June 5, 2013
- Blog Post: 1 in 100
- I recently became involved in a book project about breast cancer survivors. Although I don't have cancer, those with Alopceia often are approached with that very question. The author invited me…
- Added by Laura Dasi at 1:23am on October 7, 2011
- Blog Post: Trying to cope
- Well I have tried to avoid being open about my disease because I am so ashamed of it. But then I decided today to do a google search for alopecia and stumbled across this website and decided to join.…
- Added by Erin at 3:58pm on November 18, 2010
- Topic: Blog from HerAlopecia Forum - I found this blog very interesting.....
- one struggling with self image, hardship, and especially for fellow Alopecia sufferers. If I can help you in any way, please message me or comment below. You are not alone, and you are so much stronger than you think. I've always disliked my hair. Each morning I would get ready and think: "It's so flat." "What color even is my hair?" "Why is it so thin?" So about two years ago I decided to do something about it. No longer would I feel frustrated with my inability to manage my hair. I made an appointment with my stylist friend and asked if she could play around with my hair and give me some tips. It was all going great until she lifted up the back of my hair and said, "What's this bald spot doing back here?" "Hmmm. I don't know. What are you talking about?" Apparently there was a spot about the size of a quarter on the back of my head. It was easily covered and I decided not to think too much of it. I remembered my mom telling me I had a bald spot at the base of my ponytail when I was in grade school. The dermatologist gave me the diagnosis of "Alopecia" and it cleared up on its own, though I don't remember much about it or how long it took. So I figured this was something similar. Small and manageable. Maybe I need to chill out and relax more or something. I went home with cute, styled hair and a gnawing feeling of anxiety. Over the next month or two, hair kept falling out. It all stemmed from that one patch at the back of my head, but it soon got so big that I couldn't cover it up with a ponytail anymore. A second spot appeared above the first, and the two got so big that they joined together and made one big spot. My hair was starting to thin all over and I was scared to brush it. I was scared to wash it. I was scared to hold Molly because I thought she might grab onto it and pull more out. I was scared to talk to people because I was sure it was the first thing they noticed about me. The hair loss continued. I went to the dermatologist and again was diagnosed with an autoimmune disease called "Alopecia." He told me it causes bald patches and sometimes can lead to permanent and total hair loss. I could try treating it with steroid cream but it had a low success rate. If that didn't work, I could try injections into my scalp that were painful and had an even lower success rate. What else can I do? What causes this? "We don't know." End of conversation. So I tried the steroid cream for about 4 weeks with no results. It was around this time that I got pregnant with my second child, Cooper, so I had to discontinue the medication. I saw several doctors with differing specialities and a chiropractor who would eventually see me weekly and do laser treatments on me with something called a BAX 6000. (Yeah, I went there). Dr. Walker (the chiropractor) was the only medical professional who actually had something to say about autoimmune disease. "It's probably affected by the foods you are eating." All of the other doctors just shrugged their shoulders and said, "What else can I help you with?" I've learned that many doctors focus on treating symptoms and not preventing the cause. Throughout this process, more bald patches appeared, and I didn't like looking in the mirror anymore. I thought maybe it would be helpful to take pictures so I could keep tabs on things, but nothing was improving. It was a constant loss every day. So I stopped taking pictures, stopped looking in the mirror. I had to sweep our bathroom floor almost every day because my hair would fall out in small tufts. My brush needed to be cleaned out daily, but most of the time I just looked the other way. I didn't want to pull the hair out of it and throw it away forever. One night my husband, Scott, and I were watching TV on the couch. I remember leaning back and feeling the cold of the couch fabric against my scalp. It was a chilling feeling I will always remember. I don't usually think about or notice the temperature of the couch at all. But that day was different. I had lost so much hair that it was mostly scalp, and I could feel everything. I asked Scott, "what if all my hair falls out?" He was so unbelievably supportive and encouraging during this time. He told me every day that he thought I was beautiful and he truly meant it. I never once questioned his authenticity. I knew I could go bald and he would be just as proud to call me his wife. I am grateful beyond words for my husband. I told him I was tired of not being in control, and maybe I should just shave my head (I seriously considered this). Scott was supportive of this too. He said I should do whatever would make me happiest. We talked together and came to a conclusion: I would start with buying a wig. So I looked into buying a wig and saw how much real wigs cost ($1000-$3000, seriously). I decided I could find a way around wearing one. I decided there was no way around it and that I couldn't go out in public without a wig. I decided there was no way I could go out in public with one. I happened upon a shop in Grapevine Mills that sold cheap, synthetic beauty wigs, and I tried on my first wig there. Something about it was kind of fun. Being a different person. Feeling a different way. Not seeing any bald spots when I looked in the mirror. I spent $45 on it and took it home. When I tried it on at home, I almost cried. Why does everything look different when you get it home? I told my best friend I felt like a mermaid stripper. The volume on that thing was completely ridiculous. And somehow it had turned from blond to red in the car on the ride home. I took it off and threw it in the closet. "I've got to find another wig." Maybe if I bought a real one it would lay better on my head. Maybe it would feel more natural. So my next objective was finding at least $1500. My super supportive mom came with me to a wig boutique in Downtown Fort Worth that specializes in wigs for chemo patients. Molly was with us, and I remember being stressed to the max. Not only was I about to spend a butt load of money, my toddler was crawling around on the floor and wanting to play with these things that were about to cost me my next 5 vacations. They told me that sometimes insurance companies cover expenses like this. And oh, if I could only tell you the heartache, tears, and time wasted on this step. I don't know why insurance has to be so unbelievably complicated and obtuse, but it was and continued to be for weeks as I tried to sort this part out. (After hours upon hours of being passed around and going through paperwork and contacting doctors and listening to promises of coverage, it turns out my plan covered a whopping 0% because it wasn't "medically necessary"). At the wig boutique, I tried on one or two that seemed like they might possibly sorta kinda work if I didn't think about it too much. They were "only" $1400. But they didn't have my color in stock. I would need to purchase it first, trusting that the color would work for my skin tone. There was no return policy. And then I was supposed to make a hair appointment with them so they could shape it to my face. That was "only" $100/hour. I was on the phone with my insurance company in the boutique with Molly on the floor and my mom walking around saying positive and beautiful things about each wig. I fought against everything in me and shed tears for the first time about my hair. It was too much to handle. Too much to process. Even if I spent a ton of money on the best one, it still wasn't my hair. I would still be bald when I took it off. My mom was so sweet. "We can help pay for more of it! Which one makes you feel the best? Don't worry about the money. It's going to be fine." But there were no words that soothed. I wanted to run away from myself and from everyone around me. I couldn't put into words the stress I felt. Why won't doctors help me with this? With all of our medical knowledge, why is there no cure? Will my kids grow up and be embarrassed by me? I told my mom with everything going on that it wasn't a good day to spend big bucks on a wig. So we walked back to the car and she took me to get tacos, of course, because tacos make everything better. We ended up finding a synthetic wig at another less overwhelming boutique for about $300, and my generous parents helped foot the bill. I got it right before my husband and I left for NYC, and I was looking forward to wearing it first when I was away from anyone who might recognize me. In a new city, no one would look twice or ask any questions. But it wasn't that easy. When we got to NYC, the A/C wasn't working in our hotel room so we were in the process of switching to another floor, but the new room wasn't ready yet. Our suitcase was already a wreck because of course you can't find what you need in there after you've been through the airport even with most highly organized of bags. So clothes were everywhere and I had propped my wig up on a wig stand in the bathroom to "breathe" as I was instructed to do. Scott and I left for dinner and returned to an empty room. Our stuff was gone. The hotel staff had packed up all of our belongings and transferred them to the front desk without telling us they were doing it. My first thought was "my wig!" I felt like I had been violated. It was a piece of me that was touched and messed with and probably judged and I had no control over it. I was sick at my stomach and angry beyond words. The hotel owner apologized, but nothing could fix that feeling of my security being breached. It was a tough blow to my self-esteem - another time I felt like I had no control over my situation. The next day I decided to be brave and wear my wig for the first time. It was unbelievably hard to walk out the door. At brunch, I had to constantly redirect every thought to pay attention to the words coming out of Scott's mouth. All I could think was "I'm wearing a wig. I'm wearing a wig. I'm wearing a wig. Everyone knows I'm wearing a wig." I wanted to rip it off and throw it on the floor. But then I'd be left sporting an ugly, itchy wig cap, which didn't make me feel so good, either. We were a long way away from the hotel, so I stuck it out and tried to keep breathing. I ended up wearing it to see Phantom of the Opera that night, but it still took a lot of focus to pull my thoughts away from panic mode. Wearing a wig was so much harder than I thought it would be. It was something I thought was supposed to give me more confidence, but I felt like a foreigner in my own skin and had trouble completing a thought. When we got back home to DFW, I wore the wig to Scott's basketball banquet. It was the first time I wore a wig in front of people I knew. (So I forgot to mention...I remember the people at the boutique telling me that the wig was "flammable." "Ok...sure, sure..." I thought. "I'm never waving fire around so I'm not gonna worry about that"). Anyways, the night of the banquet, I worked up the confidence to put the wig on, and of course we were running late because we are toddler parents. The timer on the oven was going off for Molly's pizza, and by this point, Scott's parents were in the living room to take on grandparent duty for the night. I was nervous about walking through the room and having them see my wig. I walked through quickly to pull the pizza out of the oven, and as soon as I opened the oven door - tsssssssss. A hot sizzle circled my face as the smell of burnt plastic filled the air. The heat from the oven had singed my wig! In like 2.8 seconds! I was so embarrassed. I knew what had happened but I couldn't see the damage. I tucked my head down and walked briskly back to our bathroom to see how bad it was. The front of the wig was frayed in a crazy way. It looked like I had stuck my finger in an electrical socket. There was nothing I could do to repair it, because after all, it was burnt plastic. (I guess that's why they tell you to go for the wigs made of real hair...). I was devastated. After weeks spent finding a wig that I felt sorta kinda decent in and forking over the money to buy it, it was irreversibly frazzled faster than I could say, "you have GOT to be kidding me." What was I supposed to do for the banquet? I didn't want to go to a formal event with a ponytail and a headband that makes me look like a high schooler. This was one of the toughest things about losing my hair - I had trouble feeling like I could dress up or look "nice." A huge part of preparing for special events has always been making my hair look good, and with alopecia, my only options were ponytail, bald spots, or wig. I messed around with the wig and kept sticking bobby pins in it until I hid some of the frayed mess from the front of my face. The banquet was in a room with low lighting, so it helped cover up anything I couldn't hide. Still, all I could see when I looked in the mirror was frizz. It was another time I remember telling myself with every breath, "Focus on the conversation you are having. People are not thinking about your wig, and if they are it's no big deal. You've got this." Every. Single. Breath. When I got back home, I looked in the mirror and felt discouraged. I felt like I was being defeated at every turn. I started to realize how much my self identity affected me and was reminded of the verse Romans 8:28: "And we know that in all things God works for the good of those who love him." I didn't understand how the verse could be true at all, but I trusted in my heart that it was. I decided to turn the tables and use my struggle to help others. Even if I lost all my hair, I would be here to let other sufferers know they weren't alone. The first step was going public and showing everything off. I had this sneaking suspicion that every time I talked to someone, they were only thinking about my bald spots. I know this wasn't true, but I swear it felt like it was. Most people would probably tell you they didn't even notice them. I got used to covering them up with a thick, pink headband and bobby pins placed every which way. But I thought if I showed off what I really looked like, my imperfections wouldn't have as much of a hold over me. I would choose when and how they were viewed. So I made a Youtube video and shared it with the world. The outpouring of support was unreal. Friends shared hair growth products, free oils, healthy recipes, supplements, you name it. And lots of love. I turned to books and started reading everything I could get my hands on about autoimmune disease. Throughout this whole ordeal, I was connected to so many others suffering from similar conditions, and I am grateful for each and every one of them. I feel like everyone contributed a piece to a big puzzle that has helped me get to where I am today. But their stories encouraged me that I might be able to turn my situation around. The three most helpful books I found were: The Autoimmune Solution by Dr. Amy Myers The Immune System Recovery Plan by Susan Blum Change Your Brain Change Your Life by Dr. Daniel Amen I would probably say the first book was the most helpful, though it scared the crap out of me. This crazy person changed everything in her life and went as far as making her own beauty products. Umm, hello. I'm not THAT crazy...right? Dr. Myers taught me that autoimmune diseases are caused from stressors affecting your body which create unnecessary inflammation and cause our bodies to work harder than they need to in order to do normal things. Stressors can be: External stressors - stressful job situations, stressful relationships, etc. Internal stressors - food allergies, internal inflammation from medication, etc. Environmental stressors - chemicals in the air we breathe, the things we put on our skin, the cups we drink out of (this one freaked me out the most) Everywhere I looked, I saw stressors. I felt like I would never be able to free myself from them (and the truth is, we really can't). But I started small. She insisted that people with autoimmune disease eliminate gluten. My grandmother has celiac so I figured maybe it wasn't such a bad idea to go ahead and see how I felt without it, too, since it can be genetic. I eliminated gluten and caffeine (another big inflammation trigger for some people) for 30 days. And I will never go back. As a chronic anxiety sufferer, my brain felt clearer. I could process my thoughts more easily and I didn't want to crawl out of my skin when I got overwhelmed. SO much less brain fog. I couldn't believe the transformation. And at this point in my life, that is the only thing I had changed. I am confident they were related. I think this was also when I started seeing a small amount of hair regrowth. I was still losing hair, but for the first time it was growing back. What else did Dr. Myers have to say? Well, she recommended an elimination diet, which also sounded so scary to me. But, the worst thing that could happen was that I would be hangry but possibly also feel a ton better and have more hair grow back. The kicker is that I was 7 months pregnant at the time. And I was eating all the fries. But I did it anyway! I eliminated sugar, dairy, gluten, caffeine, alcohol, corn, and processed foods. ARE YOU KIDDING ME? I know right. I never thought I would be able to do it, but I did. FOR THIRTY DAYS! Which is how long you need to keep something out of your diet before it is fully out of your system. And also how long you can go like this before completely losing your sanity. (More info on how the elimination diet went for me here). Here is why a diet like this is helpful, especially when you have an autoimmune disease: The nature of autoimmune disease is that your body is attacking its own cells. 80% of the immune system is in your gut (stomach, intestines). With increased inflammation, your stomach lining thins and allows food particles that should stay inside of it to pass through to other parts of your body, which in turn makes your body upset and inflamed. Gluten is a big deal because the way it is processed has changed tremendously over the past few decades. It looks different to our body going in. Healthy bodies with strong immune systems can usually identify gluten just fine and process it normally. But for bodies with a weakened system, it gets confused more easily by the foreign chemical makeup and doesn't know quite how to process it. Here is another huge lesson learned through all of this: every single body is different. We react differently to different foods. That is why a diet like this is so helpful because you can figure out how your body responds when you add things back in slowly. There's so much more info about how to do this elimination diet so please checkout that link above for more info or here it is again. So I successfully completed the elimination diet, 7 months pregnant, and realized some crazy things: MY HAIR STARTED GROWING BACK FASTER THAN EVER BEFORE! My body totally freaked when I removed sugar. I woke up in a cold sweat with body shakes. I was having withdrawals and everything in me screamed for sugar. It was very alarming. (I have since cut my sugar consumption drastically and no longer crave it like I used to. If you think this is impossible for you, I love sugar so much that I ran my own home bakery, like for real). Eating dairy makes my stomach hurt. Gluten makes me cray cray. Eating whole foods, eliminating processed foods, and eating foods with less than 5 ingredients can make you look and feel like a completely different person. Every body responds differently to foods, and it is worth exploring. We can't eat everything that our friend can eat and have it affect us the same way. WE CAN USE FOOD AS MEDICINE TO HEAL OUR BODY. The elimination diet is pretty intense and difficult (but not impossible) to sustain. Here is what my current diet looks like: No gluten Very limited caffeine (maybe one cup of half caf/half decaf coffee every other week when I "can't even" and some unsweet tea here and there) Limited dairy (no cow's milk, and some cheese, because I just can't live without it. I've tried. I very rarely use butter and try to stick with olive or coconut oils). Limited sugar (almost no white refined sugar and I regularly use sugar substitutes like honey, maple syrup, and coconut sugar). Limited processed foods. I try to only buy products with fewer than five ingredients listed. No sodas, tons of water A green smoothie for breakfast almost every day - tons of spinach, protein powder, fruit, and almond milk. Supplements: fish oil, Turmeric (reduces inflammation), Lysine (helps to suppress viruses that lay dormant in your system), Probiotics (boosts good bacteria in your gut - super important for people with autoimmune disease), and a multivitamin 3-5 servings of organic chicken or beef a week (this is a lot less meat than I used to eat) I NEVER thought I would be this person and thought that a life like this would be boring. But guess what, I LOVE it. I love taking care of myself and seeing results. I exercise regularly and see results more quickly because of my diet. I have more energy, sleep better, and have less anxiety. Don't get me wrong... It's incredibly hard. Like, so. so. hard. It took a looooong time to find a rhythm. Try TWO YEARS of experimenting with my diet to find something that was sustainable. That was one of the biggest kickers for me was realizing that dietary changes happen slowly, and knowing that I needed to give myself lots of grace to make mistakes. I still practice the art of YOLO. I had two (or four) cupcakes over the course of my son's birthday weekend. I'm not a monster. But it's easier to turn them down because my body gets kinda upset after I eat it. And it starts the cycle over of craving sugar. Once you eliminate it for a while it really does get easier to turn it away. So yes, I consider changing my diet to be the biggest contributing factor to my hair regrowth. Other changes I made: Eliminating chemicals from my beauty products Wearing less makeup and using companies that have fewer, less harmful ingredients Making my own deodorant (yes, seriously, and I love it more than store bought deodorant. It's cheaper and smells better and lasts longer). Switching to lotions with fewer and better ingredients Switching to chemical-free cleaning products and using oils for cleaning purposes Using an essential oil-based hair regrowth treatment recommended to me by my friend Laura. Here is a link to it. It's expensive ($42) but it has lasted me 6 months and I'm only 1/4 of the way through it. Eliminating sodas and most processed foods Regularly meditating/practicing yoga Writing Showing myself grace and forgiveness Talking about my struggles with others (this is so life-giving and can completely turn your situation around) Being open about how I was feeling and being as authentic as possible (this took so much weight off my shoulders) Once you decide where you want to go, many times the universe will help you get there. Here's what happened after I shared my video: Bazillions of friends messaged me with connections to others going through similar struggles. I received tips from other sufferers for managing autoimmune disease. Friends offered a listening ear, babysitting, words of encouragement. One of the people I met was a girl from Wales who quit her job and hadn't left her house for months because of her alopecia. We got to swap stories and I was the first person she showed pictures to of her without hair. I was approached by our pastor to speak on the stage one Sunday morning about my experience in front of hundreds of people. I became more confident and realized I had the power to use my situation for good. And so many other amazing things that I can't even keep track of and am still continuing to discover. But once you decide where you want to go and commit to it with a fiery intensity, look out world! People will help you get where you want to go, and I'm so serious! My hairdresser, Debbie, was so supportive through all of it, and even came out to support me when I spoke at our church. This past week, I went in for a highlight (something I avoided during the worst of the alopecia along with haircuts because I didn't want to lose any more hairs than I had to) and after she was done she spun me around and said, "No bald spots!" I couldn't believe it. Music to my ears. At one point, I thought I would be bald forever, but staring back at me in the mirror was a head full of beautiful hair. What an answered prayer! I couldn't stop smiling all day. Lessons this journey has taught me: Your identity is not based on your appearance or the trials you face. It is based on your character. Dig down deep and fight hard against your worries and setbacks. When I let go of my physical appearance, I started focusing more on the value of others - what they were contributing to my life and how I could contribute more to theirs. I listened better, thought less about my personal concerns and was more joyful. Ask for help. It's not a sign of weakness. I learned that everyone around me has a piece of the puzzle that is my life. Everyone has something to contribute to everyone else, and it connects us and makes us more whole. I was amazed how God used people I've never even met in the flesh to heal my hurts and strengthen me in ways I didn't know I needed. Ask for help! Allow others to use their strengths where you are weak! Believe in yourself. Books, doctors, and the internet told me there was no cure. But I kept reading and researching and staying open to new ideas, and I learned more about health and wellness than I ever thought I needed. Maybe I'm just one of the lucky ones whose alopecia was reversed, but I'm convinced my dietary and lifestyle changes had a huge effect on me. You can always find something positive about a negative situation. Look hard for those positives and focus on them. Be creative and invent positives when you can't find them. It's like when you're driving - you have to look in the direction you want to go or you will crash. If you're looking toward negative thoughts, your life with follow that negative path. As soon as you focus on positivity, gratitude, things that bring life, your actions and beliefs will follow suit. We can't control everything. Do the best you can and trust God for the rest (and you might as well just trust Him with the stuff you think you're controlling, too). I can't control whether or not hair loss will start again since autoimmune diseases never really "go away." But I can do my best to trust in God and find peace knowing He will see me through no matter what the rest of my story looks like. YOU MAKE A DIFFERENCE. Share your story. It will bring you healing and connect you to someone else who feels alone. THANK YOU. A million thank you's to any and everyone who has been there for me with encouragement, support, and prayers. I have the best village a girl could ask for. I am here for you. You are not alone and you are stronger than you know. Here are my three guiding rules for life: Give yourself lotsa grace. Accept and honor yourself where you are at today. Love yourself. As much as you know how to. Because you're pretty great. <3 Tay "And we know that in all things, God works together for the good of those who love Him..." Romans 8:28 …
- Added by Suzie at 3:18pm on September 5, 2017
- Topic: My Story- My Results on Xeljanz under the care of Dr. King in CT-Remission Status
- idea what started this at the time or why it was happening to me. Fast forward a few months later I was almost completely bald and diagnosed with what was initially alopecia areata which turned into Alopecia Universalis. I went to doctor after doctor, with little answer until one morning my former boss at the time, well knowing my story and struggle with alopecia told me about a case on Good Morning America that may really help me. I went home as soon as I could that day and found any info I could. The news story was about a young man named Kyle who had plaque Psoriasis/ Alopecia Universalis who had begun a trial of Xeljanz for 12 months under Dr. King's care and completely regrew his hair back. I contacted Dr. King and was able to get an appointment, this was back in 2014. I was so excited, nervous and dreaming of a life where I wouldn't have to wake up early every morning to draw my eye brows on, wear wigs and worry about this deep insecurity that I had since all of this happened to me. For many of you, this is relatable and my heart goes out to you guys. It gets better, I promise. For forward to today 2018, Being on the medication Xeljanz on since 2014, I recently saw Dr. King, He had been slowly supporting my decision to take the medication sporadically and after only taking 4 pills a month which in his words (does absolutely nothing) We decided to embark on a journey medication free. I am in remission and so grateful for it. Yes I get spots but they are very small and few to be found. I cannot believe the progress I had on this medication. If anyone has questions or is looking to get on it, I have several months supply left that I will not be needing if anyone is interested in acquiring these bottles please message me, they are unopened and fresh within their shelf life. I know the hardship that goes into getting these bottles covered under insurance, and how expensive it can be, I would hate for this all to go to waste since I will not be utilizing them all in time. Thank you so much, Dani =)…
- Added by AlopeciaInRemissionCT at 12:22pm on January 21, 2018
Disclaimer
Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.
© 2026 Created by Alopecia World.
Powered by
