www.alopeciaworld.com
Tags:
I got Alopecia Universalis at 8 years old [4th grade]. I tried everything! Expensive Specialists in New York City. Several Dermatologists. Radiation, cortizone shots & creams, etc. My hair grew back -- then eventually fell out again, over and over and over. My hair fell out completely in 6th grade, then 10th grade. I just gave up trying. There was no cure. So I said to myself live with this until there is a cure. I am well into my 50's now -- and I'm still waiting for that cure! Show me the cure to put hair back on my head! I pray to God it will be in my lifetime.
I agree with the other posters in that time and acceptance will be your indicators for discontinued treatments. I was AA at 12yrs and am now 42 been AU for 15yrs. As a teen this whole idea was very difficult to take!! I was subjected to every ointment, liquid rub, and steroid pill in play at that time (mid to late 1980's). The ointments were the "irritate the follicle" for regrowth kind, messy and made me feel perpetually sunburned, prednisone taken 4 times a day for a few years (7am, 2pm, 7pm, 2am) made for sleepless nights for me and my Mom plus the added bebfit of weight gain!! lol). Scalp injections grew patches but fell back out. Menoxidil was liquid rub used to help control blood pressure found to have hair growth qualities, only raised my blood pressure and gave me headaches (who has high BP at 14yrs old??!!!) At one point I was sleeping in a shower cap or wrapping my head in saran wrap to create heat and moisture to open follicles!!! Needless to say from 12yrs to 16yrs all of that with the weekly derm visits and I had had enough, I was going bald no matter what they did (lost eyelashes and eyebrows at 15) regrowth occurred for about a 2yrs (with bald patches but coverable, Praise the Lord for RAVE hairspray) but was just temporary and all went again. I decided I WAS DONE!!! Started smoking and drinking and using drugs at 18 (bad decision) but continued this until age 27 had complete regrowth for 9yrs!!! Quit everything, got married and pregnant with first child, gave birth and 6 months after delivery went totally bald again!!! Discovered the drugs, etc. were my immune suppression = hair regrowth. Baby takes half of immune system hormones shift and it all goes again!! Went to derm when baby was 6 months and found that they would start immune suppression as soon as I was no longer breastfeeding. Late husband was organ transplant recipient taking immune suppression so I saw first had what that did to a person (he lived 8 1/2yrs and died anyway). So never have even considered the derm or treatments again. I have been a long time (30yrs) learning with GOd's help and supportive friends and family to accept myself as I am and be thankful that I am healthy albeit hairless. IT IS WHAT IT IS but IT IS NOT WHO I AM!!!
Hi. My name is Mark Hansen and I live on the east side of Milwaukee. I am going to be 59 on Feb 18th and I have had Alopecia Universalis, no body hair anywhere for over 47 yrs. My hair started to fall out in the 4th grade and by the 7th grade it was falling out in large patches. My parents bought me my first wig when I was 15 and I hid under one until I was 48 before I finally took it off for ever. The bottom line is that there IS no curse or Perm treatment for alopecia. I have known this for decades. The only predictable thing about it is its complete unpredictability. Mark Hansen.
One other thing: I also have hypothyroidism, which I did not discover after having a blood test at a doctors office in 1991 when I was 35. My mom had it and she didn't find out she had it until she was in her 50's. There are many symptoms of hypothyroidism, one being thinning hair or hair loss. But Hypothyroidism and Alopecia are two different conditions. My hair loss comes from my Alopecia not my thyroidism because I have been taking medication for hypothyroidism for 25 years and my hair has never come back. I have said this so many times, that I feel there are more pep, possibly mill's in the US alone, who have hypo or hyper thyroidism and don't know it, than have it, know it, and take something for it. If it were up to me doctors would suggest it for every physical examination/blood test. Google all the symptoms and you will see just what I mean. But yes I have read about pep getting cortisone and other injections in their scalp, ointments, etc. etc. But as far as I am concerned if you have it you have it and that's all there is to it. I think one of the biggest problems with this cond though is not just the hair loss but the ignorance, stares, misunderstanding, etc I havwe to say there is little chance of a cure for either. Mark in MIlw.
Bravo for you Jessica.....
Here are my thoughts....
http://www.alopeciaworld.com/profiles/blogs/the-hard-treatment
It is what it is about sums it up. I will tell you that with every hair I lost I gained weight. When I lived in Holland I had a Dutch doctor who put me on high doses of thyroid med, I lost a significant amount of weight and had regrowth, and became pregnant all in less than 3 months. Which I had not been able to get pregnant since my alopecia started.(15 years) All my health problems I have always thought were from the same thing, hormonal/thyroid related. The Dutch doctor agreed the American doctors do not, when we returned to USA I have not been able to get an American doctor to repeat the dose of thyroid meds the Dutch doctor gave me, hence no hair, not able to lose weight and went on birth control to be able to get preg with our last child.
To answer the question, I went from doctor to doctor to get answers to what was wrong in the beginning (1973) tried prednisone, to no avail and tried injections by a derm, that was the end of experimentation until 15 yrs later and we were living in Holland and I went to the Dutch doctor, my only regret is I did not go to him sooner. I would say in the first 5 years if a doctor would have suggested a treatment that sounded like it might work, I would have been willing to try it, but understand this, first they never told me what was wrong with me, I was not getting any answers as to what my disease was called, much less if there was a cure. I only found out what it was called when I started working where I had access to the information and found out what it was called myself and asked a doctor I took meeting minutes for in a hospital setting if I had found the correct diagnosis for the name of the disease that I have after I explained it all to him. This was over 20 year after the onset of AU, he informed me I had made the correct diagnosis.
I am not saying ALL with AU is due to the same cause, I just know my AU reacted with regrowth with high doses of thyroid meds and due to that, I suspect thryroid hormones are at the base cause of my problems, but getting the doctors to agree, not so easy. If they can not run a test to back up giving a med, they will not.
It is what it is about sums it up. I will tell you that with every hair I lost I gained weight. When I lived in Holland I had a Dutch doctor who put me on high doses of thyroid med, I lost a significant amount of weight and had regrowth, and became pregnant all in less than 3 months. Which I had not been able to get pregnant since my alopecia started.(15 years) All my health problems I have always thought were from the same thing, hormonal/thyroid related. The Dutch doctor agreed the American doctors do not, when we returned to USA I have not been able to get an American doctor to repeat the dose of thyroid meds the Dutch doctor gave me, hence no hair, not able to lose weight and went on birth control to be able to get preg with our last child.
To answer the question, I went from doctor to doctor to get answers to what was wrong in the beginning (1973) tried prednisone, to no avail and tried injections by a derm, that was the end of experimentation until 15 yrs later and we were living in Holland and I went to the Dutch doctor, my only regret is I did not go to him sooner. I would say in the first 5 years if a doctor would have suggested a treatment that sounded like it might work, I would have been willing to try it, but understand this, first they never told me what was wrong with me, I was not getting any answers as to what my disease was called, much less if there was a cure. I only found out what it was called when I started working where I had access to the information and found out what it was called myself and asked a doctor I took meeting minutes for in a hospital setting if I had found the correct diagnosis for the name of the disease that I have after I explained it all to him. This was over 20 year after the onset of AU, he informed me I had made the correct diagnosis.
I am not saying ALL with AU is due to the same cause, I just know my AU reacted with regrowth with high doses of thyroid meds and due to that, I suspect thryroid hormones are at the base cause of my problems, but getting the doctors to agree, not so easy. If they can not run a test to back up giving a med, they will not.
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.
© 2024 Created by Alopecia World. Powered by