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Alopecia [John Cabrera answers questions about alopecia based on his personal experience, research and information from his own doctors. We hope that the information contained within the pages of Imagiverse is helpful but we do not give medical advice and urge you to consult your own doctor (or other medical doctors) for specific information.] ¨ Can you give me advice for my 4 year old daughter diagnosed with alopecia? Back to Health & Medical Index [Links provided here were valid at the time the question was answered. If you find a broken link, please Contact Us so we can remove it.] QUESTION: ANSWER from Michelle Mock on 25 February 2007: Alopecia is not a sign of illness nor is it life threatening in any way. If your daughter does indeed have alopecia, you may want to prepare for worse possible scenario (permanent loss of all hair). There are many conditions that affect our appearance (e.g., large birthmarks, skin conditions, acne... wrinkles, graying hair, age etc., etc.). The best thing to do is not to allow them to take over our life. Who you are is what you are on the inside. You could get a second opinion from another doctor. If your daughter does indeed have alopecia, her condition could get better or worse and injections and treatments may or may not help. However, the condition does not effect, nor is it a manisfestation of her physical health. Sometimes it may look like she has totally recovered and then the hair loss will begin again. It is best to accept the condition for what it is. Do not let your daughter see or sense your distress. Let her know how wonderful she is and how hair has very little importance. Find fun hats that she can wear. Encourage her to value herself as an individual and not put a lot of concern into "normal" appearance. If necessary, educate her friends and her friends' parents about alopecia (see NAAF.ORG site). Your child and her friends will become ambassadors for the condition and help to educate an ignorant world. The most important thing to remember is that this is NOT a health issue. She is not sick. It is a "condition". The most devastating side effect is psychological when the situation does not improve and is not accepted. Don't let that happen to you or your daughter. I hope this helps. Please read John's answers in our archives as he actually has the condition and speaks from experience. QUESTION: ANSWER from John Cabrera
on 11 June 2006: Lots of luck to you all – John QUESTION: ANSWER from John Cabrera
on 28 December 2005: If your son has alopecia, you definitely can get through it. I recommend the National Alopecia Areata Foundation (www.naaf.org) as an excellent place for information and support. Good luck. QUESTION: ANSWER from Michelle Mock on 11 July 2005: Some other links that might be helpful to you are: http://www.naaf.org/ Four small "pea size patches" are really not noticeable. Your condition could get better or worse and injections and treatments may or may not help. Remember that alopecia areata is not a sign of illness nor is it life threatening in any way. There are many conditions that affect our appearance (e.g., large birthmarks, skin conditions, acne, wrinkles, graying hair, age, etc., etc.). The best thing to do is not to allow them to take over our life. Who you are is what you are on the inside. QUESTION: ANSWER from John Cabrera
on 31 December 2004: Many people dislike needles and injections. But, they often bring considerable benefit though not necessarily in the long-term treatment of alopecia. So, before even thinking of subjecting yourself to a process you dislike, you may wish simply to discuss the nature of alopecia with your specialist. She may be able to form an opinion without taking blood, etc. You can also seek a second opinion. Finally, the National Alopecia Areata Foundation has a good FAQ section and is an excellent source of information. Please go to: http://www.naaf.org/default2.asp and then look up the appropriate link. QUESTION: ANSWER from John Cabrera
on 31 December 2004: Few researchers have been able to find a link between stress and alopecia (though many of us who have alopecia seem to be able to find some sort of relevant event) and, therefore, I think you and your daughter should consult your doctor and, if your doctor recommends, a specialist, as unusual hair loss should always be investigated. Finally, the National Alopecia Areata Foundation has a good FAQ section and is an excellent source of information. Please go to: http://www.naaf.org/default2.asp QUESTION: ANSWER from John Cabrera
on 25 November 2004: The various websites I have mentioned in the past are the best places to go for FAQs of this nature; not surprisingly, this is a common question. The National Alopecia Areata Foundation is very good: www.naaf.org The following is a direct quotation from NAAF's FAQ page: "Is alopecia areata hereditary? Yes, heredity plays a role. In one out of five persons with alopecia areata, someone else in the family also has it. Those who develop alopecia areata for the first time after the age of thirty years have less likelihood that another family member will have it. Those who develop their first patch of alopecia areata before the age of thirty have a higher possibility that other family members will also have it. Alopecia areata often occurs in families whose members have had asthma, hay fever, atopic eczema, or other autoimmune diseases such as thyroid disease, early-onset diabetes, rheumatoid arthritis, lupus erythematosus, vitiligo, pernicious anemia, or Addison's disease." My sons are aged 20 and 17. To date, I have not seen any evidence whatsoever of alopecia. My brother shows evidence of occasional patchy alopecia areata, but the effects on his appearance have been minimal. He is 48 and still has a reasonable head of hair for a man of his age. QUESTION: Another possibility I found contains MSM and essential oils. My son is currently using a mixture of sulfur and coconut oil recommended by someone who had good results. There has been some regrowth, but sulfur is not pleasant to use. MSM contains sulfur, so I thought perhaps this might be a viable alternative. What are your comments about these two treatments? ANSWER from John Cabrera
on 11 September 2004: As you may have realised from my last email, I really do not believe there are any safe treatments for alopecia areata or universalis, etc. I realise you want to help your son but, in my opinion, the best way to deal with alopecia is to accept it. It is hard to face up to this at 19 (or any other age) but I feel sure your son will come to accept his new appearance as will others. If he does that, he has as good a chance as any of us of having a happy life. That is what I have done and I have been fortunate in having the support of my family. I remember when my father first saw me after I had lost my hair (as he lived abroad, I had not seem him for a while). He said I looked good and I took him at his word! Have a look at http://www.alopeciaareata.com/. This is the website for the National Alopecia Areata Foundation. You may even wish to join them for a modest subscription. They provide support to alopecia sufferers and also fund research. They are a good source of information on latest developments and self-help. ANSWER from Michelle Mock
on 11 September 2004: I am not in a position to comment on any specific products (some could be very effective and others a scam) but it pains me when manufacturers prey on suffering to make a profit. Anyone can create a website or company to sell a "miracle" product. My advice to you, and anyone looking for "cures" for alopecia, weight loss, cancer or anything else... before you spend your money, get all the information you can on products from reputable sources. Always consult with your personal physicians first. They are often able to give you the straightforward answer and their first concern is your health. Beware of what you read on the Internet. Not everything you read is true. Be careful when purchasing products through the Internet. A moneyback guarantee is not much good if all you have is a discontinued P.O. Box or URL. Imagiverse can not give specific medical advice. What John has shared through his answers comes from experience. He has been there. If there was a sure fire cure for alopecia, John would probably have a full head of hair... but he doesn't need it! He looks great just the way he is. When you look at your son, don't see "alopecia". See the handsome 19 year old that you are so proud of and let him know how great he looks, with or without hair. We can't do anything about what cards we are dealt, but we can choose how to play the hand. Encourage your son to put on a poker face and play that hand with courage. He'll come out a winner. QUESTION: ANSWER from John Cabrera
on 12 May 2003: I am sorry you have had to put up with alopecia for so long and from such an early age. But, even though I don't know you, I am proud of you for your courage and strength. I have met a number of young women who have had the same experience as you and they too have generally been cheerful and positive people. People like that, people like you make me feel great. That is a rare gift. As you know, I am not entitled to give medical advice. So you should consult your doctor or other doctors (if you want second and third opinions. You say you are on a lot of medication and, although I cannot deduce this from your email, it may be that your treatment covers more than one condition or is part of a complex treatment regime. I have based the following on my own experience, articles from the internet and Encyclopaedia Britannica. You can look at many of these sources yourself, Useful hyperlinks are: National Alopecia Areata Foundation www.alopeciaareata.com and www.keratin.com. I understand that people who have had patchy alopecia areata for less than one year are likely to respond well to treatment. But when alopecia areata, and its more severe manifestations, has persisted, with or without treatment, for more than two years the prognosis is much poorer. The extent of side effects from steroid treatment is, I believe, related to strength of doses and the way in which these are applied. So, with topical treatments (creams, lotions, etc.), side effects would be the least but could still include folliculitis (inflammation of the hair follicles that can be persistent, but not irreversible), acne outbreaks, local skin atrophy where the cream is applied and very occasionally hypertrichosis (excessive, abnormal hairiness that may be localised or covering the entire body). With treatment involving localised injections, you can suffer from pain from the injections and atrophy of the skin around the injection site. This atrophy is usually reversible unless the region has been repeatedly injected over time. With all treatments there is a risk of systemic absorption if doses are too high and/or too frequent and more serious side effects are likely to follow. The most intense treatments use systemic absorption. Such treatments are usually taken orally or can be injected into a muscle. After oral or injected administration of a drug, absorption into the bloodstream occurs in the stomach and intestine. The rate of absorption depends on factors such as the presence of food in the stomach, the particle size of the drug preparation, and the acidity of intestinal contents. Absorption is a quick process. Serious circulatory and respiratory effects can occur with systemic drug treatment. Systemic application of steroids is the most powerful form of corticosteroid treatment and, so my own doctor has told me, is generally highly effective in producing hair re-growth. But, systemic use of steroids has been shown not to alter the long-term prognosis for alopecia. Systemic applications generally promote temporary re-growth of hair with a subsequent relapse when the treatment is stopped. For this reason, and the need to get people off systemic steroid use as soon as possible, this form of treatment is frequently used in conjunction with something else to help maintain the re-growth when systemic steroid treatment is stopped. Systemic corticosteroid treatment is usually only a treatment of last resort because of the potential for serious side effects. Systemic treatment is generally limited to just a few weeks before it must be stopped. Side effects include weight gain, acne outbreaks, menstrual problems, mood swings, migraines, cataracts and other eye complications, stunted growth in children, osteoporosis, high blood pressure, and/or diabetes. These are all unpleasant and high blood pressure, in particular, worries all doctors and is a known risk factor for heart disease and early death. I know that people with alopecia universalis are capable of re-growing hair even after many years of hair loss. I get occasional re-growth on my scalp and other parts of my body but the re-growth never makes any real progress. A few years ago, I visited a dermatologist to see if the re-growth, combined with corticosteroid (or any other) treatment would be worth trying. However, he was quite unwilling to prescribe any medication. He took the view that, if I was coping well and feeling healthy, there was no point in interfering with my immune system. Steroid treatment would eventually have to be discontinued and the baldness would return. This is, I imagine, a rather disappointing answer but please do not rely on what I say. I have no doubt that a cure, that does not produce nasty side effects, will one day be found. But it may take a long time. Your doctor will advise you. Again, you are perfectly entitled to obtain other medical opinions and I would urge you to do that. You should not start or stop any medical treatment without medical supervision. If you want to write to me again, please do so. And, I would be happy to hear of your progress. More than anything, I wish you happiness and a long healthy life. Best wishes. John QUESTION: ANSWER from John Cabrera
on 29 April 2003: A qualification I must make is that I am not an expert in the aetiology of alopecia and I cannot tell you what the statistical likelihood is that any of your children will suffer from the condition. I suspect alopecia is hereditary. But that does not guarantee your children will exhibit the condition. I have two sons aged 15 and 18, neither of whom has shown even the slightest hint of alopecia areata. That said, my brother, in his mid-forties, has patchy facial hair. This is alopecia areata. Not a big problem, as he is clean shaven but, undoubtedly, a sign the condition is present. A 50-year old friend of mine, who has normal hair, has a father who suffers from alopecia universalis. My friend has never shown any signs of alopecia other than normal male pattern hair loss. So, from my limited personal experience, I have not seen a transfer of alopecia universalis from one generation to another. But, rather than attempting to give you false assurance, please permit me to say you are fortunate to be about to explore the power of love, between you and your wife, to create a family. You and your children will face many challenges as they grow up and in their adulthood. Your feelings about your children's risk of losing their hair and your knowledge of all the other hardships of life should not spoil your hopes for an exciting and happy family life. So, I shall limit my last thoughts to congratulations and warmest wishes for you, your wife and your future family for many years of happiness and prosperity. Best regards. John Cabrera |
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Updated: 11 July 2007 |
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