Hi donna, I feel your pain. I too was diagnosed 12 years ago and only support offered was a paper hanky. The internet was at its infancy, I only hope people newly diagnosed gain more help and understanding by like minded people on here. Live south of Glasgow and would be glad to chat if it would help ease the loneliness. I too am 49, long term partner and two strapping teenage boys. I think most people expect you to come to terms with hairloss over time but some days its still very hard to accept and look in the mirror without the cloud of depression and vulnerability descending. you take care, Lorna :P
Hi Donna. My name is lorna and I have Alopecia a almost 11 years. Ur comment sums it all up for me. It's ridiculously hard and extremely unfair. All I can say is you are not alone and I completely understand how u feel. I'm sure your family will keep u going but don't forget to mind yourself. Cry rant get angry - it's what I do. But remember this is not it fault and with all my heart I'd give away my Alopecia and all of the experience I've had with it. Sadly we don't get to do that so feel how u need to feel, but don't be too hard on yourself. Best wishes. Lorna
Can't cope any longer? I have had Aleopecia Universalis, no body hair any where, for over 40+ yrs. My hair started falling out in the 4th grade when I was 8 yrs. old in 1964. By the time I was 13 I had less and less hair, just random patches of hair all over my head, that is until, what I had left was ripped out by the school bullies. Sometimes I think I should give myself a medal. Many of the teens who have committed these mass school shootings these past years, have done so for reasons that have been way less relevant than what I went through. "I did it because I was bullied and I couldn't take it anymore?" I guess the blessing was that back in those years coping by just bringing a assault file to school and killing every one was not a common trend yet. Nevertheless, these are/were supposed to be some of the best years of one's life. All I remember is the bad. My parents bought me my first (high quality) wig the summer before I went into high school in 1971. God bless them for doing that but those years were not much better because my secret wasn't a secret very long. Needless to say I ended up wearing wigs for the next 35-40 yrs. I finally took my last one off about 10 yrs. ago. Now I wear a baseball cap every where because I am so use to having something on my head. But as much as I thank my late parents for buying me those wigs. They really did me little or no good as far as any social life goes. I hid under these wigs for decades. And instead of taking more chances, for instance, by approaching women, in bars, at college, etc, which was my fault, I simply shied away because I assumed they would be turned off if and when I had to tell them about my condition. To this day I have never had a girl friend or relationship in my whole life. I lost my virginity at age 48 to someone I met on the internet 9 yrs ago. That's it. I work out at the downtown YMCA 4 times a week. I am in great shape. I go to a couple of local Milwaukee bars a couple of times a week to talk to people I know. But otherwise I'm still completely alone to this day. But the biggest problem that I have had to deal with, other than the fact that I cannot hide the fact that, I have no eye brows or eye lashes either, (there are no wigs for that) which gets me double takes on places like the bus every day, is the ignorance and derogatory assumptions I get, even today. And there is no age barrier or limit for that. So called, grownups are and can be just as stupid and ignorant as any 8 10 13 or 21 yr. old. But we simply cannot stop and tell every one about our problem or condition. I wish I could. So, even though I have in fact been seeing a shrink for the past 5 yrs, & I take anti-depressents to get me through what is supposed to be a life, so far, I live on. Besides, I promised my mother, who died 3 year ago last April 20th, that I would carry on and hang in there. And it's easy for me to say. But educate and explain to people when you can. And even though I am not in any way an idealist. I lost that decades ago, try to remember, "All those who matter in your life, don't mind, and those who mind, don't and shouldn't matter. With love and kindness, Mark Hansen, Milw. WI.
Donna,
Hang in thee if you need to seek professional help please do that. You are a beautiful person, believe that if not for yourself your children.
I developed AU 2 1/2 years ago after 57 years of having a full head of hair and full beard, now I'm totally hairless. Yes I struggle with it everyday but I truly believe God has a plan for me, and his plan involves me being hairless.
Hang-in you are a Beatiful person don't ever think different.
Donna you can DO IT! God made us women very strong! We just need to focus on all the Positive things and I'm sure you can do it...I have had alopecia for more than 20 years... So believe me it will get better i promise you that... But in order to get better you have to do your self a BIG favor! YOU have TO FOCUS in what you all ready have! your HEALTH, your HUSBAND YOUR DAUGHTERS and all the beautiful things that you have at this time. Don't let alopecia take over your happiness... Its not worth it. Donna ask your self this questions, can I walk, hear,see,dance,sing? or do I need my hair do all this? Look around and see how many really sick people are out there-I'm sure a lot of them would prefer to have alopecia but be healthy! Donna and my best advise is to pray. Pray the Lord to give you strength and guidance on how to cope with alopecia. here are 2 Bible verse that I would like for you to read every time you feel sad... one of them is on
Mathew 6:34 "So, never be anxious about the next day,for the next day will have its own anxieties. Sufficient for each day is its own badness".
the other verse is on...
"Psalms 55:22: "Throw your burden upon Jehovah himself, And he himself will sustain you. Never will he allow the righteous one to totter".
Donna, I've been completely bald for 2 years with intermittent growth of spots. A friend who has female patterned baldness forwarded this to me and I read those words for comfort and acceptance! I've just signed up to be telephone support for NAAF because I feel God wants me to help women cope with this disease. I'd be happy to talk to you if you need an ear!
The Word of God Says in Jesus Christ...
I am God's child (John 1:12)
I have been justified (Romans 5:1)
I belong to God (1 Corinthians 6:20)
I am assured all things work together for good (Romans 8:28)
I have been established, anointed and sealed by God (2 Corinthians 1:21-22)
I am confident that God will perfect the work He has begun in me (Philippians 1:6)
I have not been given a spirit of fear, but of power, love and self-discipline (2 Timothy 1:7)
I am given God's glorious grace lavishly and without restriction (Ephesians 1:5,8)
I am in Him (Ephesians 1:7; 1 Corinthians 1:30)
I have redemption (Ephesians 1:8)
I have purpose (Ephesians 1:9 & 3:11)
I have hope (Ephesians 1:12)
I am included (Ephesians 1:13)
I have been chosen and God desires me to bear fruit (John 15:1,5)
I am a personal witness of Jesus Christ (Acts 1:8)
I have been shown the incomparable riches of God's grace (Ephesians 2:7)
God has expressed His kindness to me (Ephesians 2:7)
I have peace (Ephesians 2:14)
I am secure (Ephesians 2:20)
I am a holy temple (Ephesians 2:21; 1 Corinthians 6:19)
I am a dwelling for the Holy Spirit (Ephesians 2:22)
I know there is a purpose for my sufferings (Ephesians 3:13)
I am completed by God (Ephesians 3:19)
I can bring glory to God (Ephesians 3:21)
I can have a new attitude and a new lifestyle (Ephesians 4:21-32)
I can give thanks for everything (Ephesians 5:20)
I can be strong (Ephesians 6:10)
I am not alone (Hebrews 13:5)
I am not in want (Philippians 4:19)
My heart and mind is protected with God's peace (Philippians 4:7)
I am chosen and dearly loved (Colossians 3:12)
Lol ok struggling posting this on my phone!! Anyway just wanted to finish by saying, take care, your stronger than you think you are at this time and your not alone. Xx
Morning Donna, I read your post about losing the will to continue the fight, I understand fully where your at. I'm a fellow sufferer, have been for 25 years. If you ever need a listening ear, just drop me a line and I'll give you my number etc. f
Donna, you are fighting and struggling with this problem because you have not found the answers you need nor the right person to help you with this problem. Allow me to fight for you, let's start by determining what type to hair loss you have, how much hair you have left and identifying the "root cause" of this problem. One way or another I believe I can give the help and information you need to help you get through this problem. Believe it or not we have made a great deal of progress using new treatments and new technology that help women determine the underlying cause of hair loss, in which, I believe is the first step in finding a solution. I promise to do everything I can to help you. I am Joanne Washington, Hair Restoration Specialist and Hair Loss Consultant, 30 years in the hair industry. I want to help and would be please to answering any questions you have, free of charge.
Hey Donna
Thanks for add. As you can see from my profile I work with alopecia every day. I'm not on here however to promote a business (am an employee only) but to give advice and help if I can. Because you are in Scotland I can talk you through the NHS situation and what you can expect from them. Any questions, please ask, there's not a lot of information out there I know. And if you just want to vent about alopecia and wigs in general, even though I work in the industry I won't be offended.
Donna,
Just saw your comment and just added mine on the fingernails site. For a woman it's worse I am sure than for me.
Faith that the Lord has something in store for me as a result of this illness just as He did when I developed Cancer at 32 is still something that I think about daily. Incidentally, I am 68 now, blessed with 3 kids, and 11 grandchildren. Last weekend, one of my granddaughters patted my head and said, "don't worry Grandpa, when you grow up, you'll have hair just like me". She was almost 3 before her hair grew in.
Will add you to my prayer list immediately, though lately it is becoming almost ungainly as I review it due to the numbers there. Many more are hurting than I could ever imagine.
To quote from God's word, "even the hairs of your head are numbered". When I am able to reply positively to you and offer some small form encouragement, I am reminded, that when I put others first, my concerns seem to disappear and I have to offer up Praise and Thanksgiving.
Warmest thoughts and many blessings to come.
Dan Caster
hey donne, welcome
how r u doin, i see we're from the same area i live in ratho, which i say edinburgh but still no sure if its part of it or not, lol,
anyways would be gd to catch up sometime, hope ur well, take care
Hi DOnna, I wanted to welcome you to Alopecia World. I can honestly say that we are a great community here and I hope you enjoy the time you spend with us.
Hello and welcome, Donna!
How are you today? I've had alopecia for about 30 years and wrote a book about it...you can find out more on my page. It's helped a lot of women who have difficulty coping.
LeslieAnn
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.
DONNA WOOD's Comments
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Can't cope any longer? I have had Aleopecia Universalis, no body hair any where, for over 40+ yrs. My hair started falling out in the 4th grade when I was 8 yrs. old in 1964. By the time I was 13 I had less and less hair, just random patches of hair all over my head, that is until, what I had left was ripped out by the school bullies. Sometimes I think I should give myself a medal. Many of the teens who have committed these mass school shootings these past years, have done so for reasons that have been way less relevant than what I went through. "I did it because I was bullied and I couldn't take it anymore?" I guess the blessing was that back in those years coping by just bringing a assault file to school and killing every one was not a common trend yet. Nevertheless, these are/were supposed to be some of the best years of one's life. All I remember is the bad. My parents bought me my first (high quality) wig the summer before I went into high school in 1971. God bless them for doing that but those years were not much better because my secret wasn't a secret very long. Needless to say I ended up wearing wigs for the next 35-40 yrs. I finally took my last one off about 10 yrs. ago. Now I wear a baseball cap every where because I am so use to having something on my head. But as much as I thank my late parents for buying me those wigs. They really did me little or no good as far as any social life goes. I hid under these wigs for decades. And instead of taking more chances, for instance, by approaching women, in bars, at college, etc, which was my fault, I simply shied away because I assumed they would be turned off if and when I had to tell them about my condition. To this day I have never had a girl friend or relationship in my whole life. I lost my virginity at age 48 to someone I met on the internet 9 yrs ago. That's it. I work out at the downtown YMCA 4 times a week. I am in great shape. I go to a couple of local Milwaukee bars a couple of times a week to talk to people I know. But otherwise I'm still completely alone to this day.
But the biggest problem that I have had to deal with, other than the fact that I cannot hide the fact that, I have no eye brows or eye lashes either, (there are no wigs for that) which gets me double takes on places like the bus every day, is the ignorance and derogatory assumptions I get, even today. And there is no age barrier or limit for that. So called, grownups are and can be just as stupid and ignorant as any 8 10 13 or 21 yr. old. But we simply cannot stop and tell every one about our problem or condition. I wish I could. So, even though I have in fact been seeing a shrink for the past 5 yrs, & I take anti-depressents to get me through what is supposed to be a life, so far, I live on. Besides, I promised my mother, who died 3 year ago last April 20th, that I would carry on and hang in there. And it's easy for me to say. But educate and explain to people when you can. And even though I am not in any way an idealist. I lost that decades ago, try to remember, "All those who matter in your life, don't mind, and those who mind, don't and shouldn't matter. With love and kindness, Mark Hansen, Milw. WI.
Hang in thee if you need to seek professional help please do that. You are a beautiful person, believe that if not for yourself your children.
I developed AU 2 1/2 years ago after 57 years of having a full head of hair and full beard, now I'm totally hairless. Yes I struggle with it everyday but I truly believe God has a plan for me, and his plan involves me being hairless.
Hang-in you are a Beatiful person don't ever think different.
Mark
Donna you can DO IT! God made us women very strong! We just need to focus on all the Positive things and I'm sure you can do it...I have had alopecia for more than 20 years... So believe me it will get better i promise you that... But in order to get better you have to do your self a BIG favor! YOU have TO FOCUS in what you all ready have! your HEALTH, your HUSBAND YOUR DAUGHTERS and all the beautiful things that you have at this time. Don't let alopecia take over your happiness... Its not worth it. Donna ask your self this questions, can I walk, hear,see,dance,sing? or do I need my hair do all this? Look around and see how many really sick people are out there-I'm sure a lot of them would prefer to have alopecia but be healthy! Donna and my best advise is to pray. Pray the Lord to give you strength and guidance on how to cope with alopecia. here are 2 Bible verse that I would like for you to read every time you feel sad... one of them is on
Mathew 6:34 "So, never be anxious about the next day,for the next day will have its own anxieties. Sufficient for each day is its own badness".
the other verse is on...
"Psalms 55:22: "Throw your burden upon Jehovah himself, And he himself will sustain you. Never will he allow the righteous one to totter".
Well Donna you take care and keep Strong!
The Word of God Says in Jesus Christ...
I am God's child (John 1:12)
I have been justified (Romans 5:1)
I belong to God (1 Corinthians 6:20)
I am assured all things work together for good (Romans 8:28)
I have been established, anointed and sealed by God (2 Corinthians 1:21-22)
I am confident that God will perfect the work He has begun in me (Philippians 1:6)
I have not been given a spirit of fear, but of power, love and self-discipline (2 Timothy 1:7)
I am given God's glorious grace lavishly and without restriction (Ephesians 1:5,8)
I am in Him (Ephesians 1:7; 1 Corinthians 1:30)
I have redemption (Ephesians 1:8)
I have purpose (Ephesians 1:9 & 3:11)
I have hope (Ephesians 1:12)
I am included (Ephesians 1:13)
I have been chosen and God desires me to bear fruit (John 15:1,5)
I am a personal witness of Jesus Christ (Acts 1:8)
I have been shown the incomparable riches of God's grace (Ephesians 2:7)
God has expressed His kindness to me (Ephesians 2:7)
I have peace (Ephesians 2:14)
I am secure (Ephesians 2:20)
I am a holy temple (Ephesians 2:21; 1 Corinthians 6:19)
I am a dwelling for the Holy Spirit (Ephesians 2:22)
I know there is a purpose for my sufferings (Ephesians 3:13)
I am completed by God (Ephesians 3:19)
I can bring glory to God (Ephesians 3:21)
I can have a new attitude and a new lifestyle (Ephesians 4:21-32)
I can give thanks for everything (Ephesians 5:20)
I can be strong (Ephesians 6:10)
I am not alone (Hebrews 13:5)
I am not in want (Philippians 4:19)
My heart and mind is protected with God's peace (Philippians 4:7)
I am chosen and dearly loved (Colossians 3:12)
Donna, you are fighting and struggling with this problem because you have not found the answers you need nor the right person to help you with this problem. Allow me to fight for you, let's start by determining what type to hair loss you have, how much hair you have left and identifying the "root cause" of this problem. One way or another I believe I can give the help and information you need to help you get through this problem. Believe it or not we have made a great deal of progress using new treatments and new technology that help women determine the underlying cause of hair loss, in which, I believe is the first step in finding a solution. I promise to do everything I can to help you. I am Joanne Washington, Hair Restoration Specialist and Hair Loss Consultant, 30 years in the hair industry. I want to help and would be please to answering any questions you have, free of charge.
Thanks for add. As you can see from my profile I work with alopecia every day. I'm not on here however to promote a business (am an employee only) but to give advice and help if I can. Because you are in Scotland I can talk you through the NHS situation and what you can expect from them. Any questions, please ask, there's not a lot of information out there I know. And if you just want to vent about alopecia and wigs in general, even though I work in the industry I won't be offended.
Linda
Just saw your comment and just added mine on the fingernails site. For a woman it's worse I am sure than for me.
Faith that the Lord has something in store for me as a result of this illness just as He did when I developed Cancer at 32 is still something that I think about daily. Incidentally, I am 68 now, blessed with 3 kids, and 11 grandchildren. Last weekend, one of my granddaughters patted my head and said, "don't worry Grandpa, when you grow up, you'll have hair just like me". She was almost 3 before her hair grew in.
Will add you to my prayer list immediately, though lately it is becoming almost ungainly as I review it due to the numbers there. Many more are hurting than I could ever imagine.
To quote from God's word, "even the hairs of your head are numbered". When I am able to reply positively to you and offer some small form encouragement, I am reminded, that when I put others first, my concerns seem to disappear and I have to offer up Praise and Thanksgiving.
Warmest thoughts and many blessings to come.
Dan Caster
how r u doin, i see we're from the same area i live in ratho, which i say edinburgh but still no sure if its part of it or not, lol,
anyways would be gd to catch up sometime, hope ur well, take care
speak sn, xx
Cheryl
co-founder
How are you today? I've had alopecia for about 30 years and wrote a book about it...you can find out more on my page. It's helped a lot of women who have difficulty coping.
LeslieAnn
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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.