Archive for medical condition
A Reader Shares His Own Hyperhidrosis Journey
Posted by: · on September 16, 2010 | CommentsThere are allegedly 178 million of us in the world who suffer from Hyperhidrosis. Due to the secrecy we often impose upon ourselves, I would venture a guess and say that number is significantly higher. Each one of us has a story.
I love love that some of you feel compelled to contact me in order to share your own story. It is therapeutic for you to unburden yourself, and it is so comforting to the rest of us to read about what you have gone through. It is a win-win!
I was contacted over last weekend by a gentleman who goes by the name of Wolfmaan. His may be one of the most unique stories about life with Hyperhidrosis there is. You may identify with some of what he describes having gone through, but I wonder if any of us would have the chutzpa to address his biggest problem in quite the way he has!
“My name is Wolfmaan. My entire life I have suffered from Hyperhidrosis.
When I was young, I dreaded winter because I had to wear shoes and gloves. This meant that I would go through three, uncomfortable and horrific stages.
Sweating: Covered or not, my hands and feet would sweat so badly it would literally drip off my hands and feet. Doctors prescribed dozens of treatments from electric shocks, to moisturisers – nothing worked.
Swelling: If I ignored the sweating, my body would strike back. Wearing shoes and socks, or gloves for an entire day would cause my hands and feet to swell. The swelling would get painful, itchy, and I would be unable to concentrate whatsoever on anything.
Peeling: If I ignored the sweating and swelling, my body had yet another trick. It would give me dozens of small painful blisters which felt like slivers and would then peel and leave sore, soft skin underneath.
I was constantly in trouble for not wearing shoes at school, and the often at work as I grew older the same thing would happen.
No one seemed to be able to understand I didn’t just like to go barefoot – I needed to go barefoot. Even wearing flip-flops my feet would sweat, peel, and swell very badly.
It was only after the advent of the internet I learned that the easiest thing to do was stay barefoot. There are dozens of barefoot support groups available and I read that many people were in the same situation. It was a relief to learn this. I was not alone.
After dozens of bizarre treatments which did not work, I had discovered a natural solution which suited me fine, cost me little money, and I could do long term.
Speaking with my doctor, he advised me that if I did not want the expensive botox injections, or risky surgery – then going barefoot may be a viable option. My doctor also assured me that this was a disability and nothing to be ashamed about.
I have been consistently barefoot for about four years now and have found a great improvement in how I feel. I no longer dread going to work, or school and having my feet literally rot while I am wearing shoes and socks.
My doctor was supportive and gave me a note for my employer or school to advise them I am required to go barefoot due to my disability.
It’s been a life changing choice which has brought many challenges, adventure and excitement.
I will sometimes get asked to leave a store, or get strange looks from people. I learned to understand that anyone who has a disability would get strange looks. Whether in a wheelchair, missing a limb, or in my case going barefoot. I learned to deal with the social implications and understand them.
You can certainly learn to deal with hyperhidrosis in creative ways.
The most important thing to remember is you are not alone and there are support groups out there to help you deal with it.”
If you visit Wolmaan’s website at www.Wolfmaan.com, you can see how he has embraced life barefoot. This is amazing to me– I believe it takes a great deal of courage to just do what you need to do regardless of the reaction of others.
We are different; most of us go to great lengths to conceal that and conform. Perhaps once in awhile the better option is to make your own path. Just don’t try to walk in Wolfmaan’s shoes. He hasn’t got any!
HyperhidrosisAndMe Weekly Spotlight: Insurance Coverage for Hyperhidrosis
Posted by: · on September 7, 2010 | Comments
The spotlight this week is on health insurance coverage for hyperhidrosis. I know, YAWN. Please keep reading, though– I have a few points to make that could help with your treatment!
If you have….by any chance… read my report on ETS (on your right, over there → 
), you may know that you really MUST be proactive in dealing with your coverage.
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Herewith, a few facts and tips:
- In case you haven’t noticed (sarcasm alert), hyperhidrosis does not seem to get much attention in society at large, and also is the red-headed stepchild in the medical community as well. This tends to result in health insurance policies either giving extremely narrow coverage parameters, or ignoring the disorder altogether.
- You really need to know what your policy does or does not cover. Absolutely do not, DO NOT, call your insurance company and ask if something is covered. Read the damn thing yourself. This was a mistake that I made that very nearly cost my family $20,000. It didn’t cost me in cash in the end, but the distress it caused was very real and completely unnecessary. Hypothetically: You call your insurance company and ask, “Am I covered for Botox treatments for hyperhidrosis?” The person on the other end (who gets paid whether or not the answer you get is accurate or not) may respond, “Well, is it medically necessary?” To which you reply, “Yes, absolutely, I think so!” That person then replies, “Well, then you’re covered!” Then, you merrily go on your way and get the treatment. Weeks or months later, a letter comes in the mail from your beloved insurance company informing you that you did not take the proper steps to prove medical necessity and therefore coverage for the treatment is rescinded. And you are left with the bill. Really. That happened to me, but the treatment was not Botox. It was about 20× more expensive.
- Oftentimes, the aforementioned “proper steps to prove medical necessity” for anything invasive and/or expensive require you to do any number of things, such as taking oral medication, using a prescription topical treatment, iontophoresis, etc. Skip any of these steps at your own expense.
- Many policies I have reviewed will only pay for treatment of hyperhidrosis if hyperhidrosis is directly causing skin infections or diseases. This means that you are only eligible for relief from sweating if the sweating is causing you bodily harm. Because we are apparently not suffering enough. (sorry, insurance makes me snarky)
- If your insurance company balks at covering your treatments, a letter of medical necessity from your doctor may change their stance.
- If your insurance company refuses to cover your treatments or if you feel you are being treated unfairly, do not hesitate to contact the insurance commission for your state. This is one of the things that I did, and I think it really helped my case.
- Keep a written record of all communication between you and the insurance company: dates, names, brief outlines of conversations. Also print out any emails and keep any letters. Again, that probably factored in my little victory.
- If it is worth the expense, don’t be afraid to get a lawyer involved. Once again, I did!
- For more information and to download letters of medical necessity and other helpful forms, go to http://www.SweatHelp.org, which is the website for the International Hyperhidrosis Society. See “Insurance Tools”– they have it all covered (pun intended
)!
Please keep in mind that it costs insurance companies NOTHING to rescind payment or promise of payment for a procedure/treatment you have already received! My lawyer told me that the vast majority of people who are denied coverage just accept the decision. Don’t be one of them.
You have a medical disorder: Your Sympathetic Nervous System does not work properly. You do need medical intervention to correct it. You pay for medical insurance; therefore, you have the right to coverage for the medical interventions your hyperhidrosis requires. It is wrong that you should have to fight for that. But you may have to– and I hope you will.
If we don’t fight for what we are entitled to, how will anything change? Do you want to fight insurance companies for the next 20 years? I don’t.
An Open Letter About Hyperhidrosis in Children
Posted by: · on August 25, 2010 | CommentsEarlier this month, I came across an article published in a medical journal that addressed the issue of anxiety in children, advising what pediatricians should be looking for. While the article was written for the medical community and not “lay” persons such as myself, I naturally felt the need to add my two cents.
Having been a child who suffered in isolation, I felt I had a different perspective to offer. You can read the article here and you will see that the author (who is, from what I understand, a top professional in her specialty) goes into great detail about using screening tests and other tools to determine whether a child suffers from anxiety disorder, panic attacks, or even OCD. I firmly believe an “anxious” child should be screened for hyperhidrosis, as well. Here is an excerpt of what I wrote:
“….I am writing to you because I wanted to share another perspective on anxiety in children and adolescents.
I am a stay at home mother of five children who range in ages 5-15. I also have started a website recently about primary hyperhidrosis. I hope it is not presumptuous of me, but I wanted to let you know that I suspect that at least some children– particularly adolescents– who present as anxious may actually be anxious due to hyperhidrosis. As I’m sure you already know, hyperhidrosis often appears during puberty, which is most certainly a bewildering, upsetting, and embarrassing experience.
I write about hyperhidrosis because I have had it since early childhood. I grew up with the slow realization that I was different from everyone else I knew. As I grew older, the subliminal message that sweating is shameful and disgusting (thank you, advertising campaigns of the 1970′s) became ingrained in me and I regarded myself in that light. By the time I was 13, I was anxious and desperate to make it stop. I was also too utterly ashamed to tell a soul about it. It never occurred to me that I had a disorder; I was simply convinced that I was a freak and as such, utterly worthless. This, despite the fact that I was the adored youngest child of a large, close-knit family.
One night, after sweating uncontrollably throughout Urban Cowboy (who does that during a movie??), I had had enough and was caught by my older sister rifling through medicine cabinets, determined to commit suicide. I tried to explain why I was so distraught; I finally spoke of my shame and the source of it. They (my parents and adult older siblings) brushed it aside. They determined, despite my protests, that I was suicidal due to some other family dynamics which had indeed created a tense atmosphere in our home. Of course that was a factor in my anxiety, I do know and acknowledge that. But I also know that I was an adolescent with nowhere to turn, dealing with an issue that was bigger than me. I never spoke of my sweating again until I was in my early 30′s and heard the word “hyperhidrosis” quite by accident.
I am telling you this because I know that my experience is not unique. I also know that for reasons I cannot understand, the fields of psychiatry/psychology seem to be rather oblivious to the severe damage hyperhidrosis wreaks on the self-esteem of people who are like me. Perhaps the reason is that “we” are so ashamed that we suffer in isolation and fail to explain the source and depth of our pain. It is not “just sweating”. It is the pain of being different, of not being in control, the fear of discovery through the senses of touch, sight, and smell. It is every day.
People who don’t suffer from this really, truly, don’t “get it”. Sadly, many therapists could ease this pain and are utterly uninformed and thereby make it worse. I had a wonderful therapist (an LCSW) whom I admire in every other respect, but who told me that it was all in my head; that I could completely control it with meditation and therapy. I now know how wrong he was, and I wasted a lot of time and energy on something that was not helpful.
How many pediatricians are missing this diagnosis? Hyperhidrosis has no definitive cure, but a referral to a dermatologist for medical treatment and a referral to an informed psychologist could make a world of difference to a child who is drowning in shame.
I have carved out a wonderful life, but I wonder what my life would have been like if I had not been convinced I was a freak for 33 years of it….”
I should have added that my family did try to help me through that rough period by sending me to a psychologist. If that psychologist knew that what I had was a medical disorder and had diagnosed me with hyperhidrosis, it would have saved me from a great deal of pain and self-loathing. Sad to say, I believe very little has changed since the early ’80′s in that regard. The same oversights are likely still occurring all over the world.
Excessive Sweating, a.k.a. Hyperhidrosis Discussed Scientifically on the “Today Show”
Posted by: · on August 3, 2010 | CommentsJust before we left last week to go on our annual family vacation to Door County, Wisconsin, my mother casually mentioned that she saw “a girl talking about sweating” on the “Today Show”. Given that it has been a week since it aired (sorry!), you may have seen or heard about it, but nevertheless, I have it embedded below. It covers the bases succinctly and pretty well, and it is always, always good to see hyperhidrosis get attention.
Why is it that when nationally aired or syndicated shows do a segment on hyperhidrosis, their expert of choice seems to always be a doctor? Dr. Peterson (above) does an excellent job of laying out the scientific facts; wouldn’t it be a relief if for once someone who actually suffers from this disorder were given the chance to describe the emotional impact of hyperhidrosis?
The general lack of public awareness that abnormal sweating is a disorder, coupled with the perception of sweating as something distasteful, make for a whole lot of misconceptions on the public’s part and buckets full of shame on our parts. We need to be more vocal and less ashamed.
Hyperhidrosis isn’t going away, at least not anytime soon– we need to learn to manage it if we can’t cure it. Part of managing it must include being emotionally healthy about it, and the first step to emotional health has got to be openness. Openness leads to understanding. Wouldn’t that be nice??
Could Your Adolescent Be Suffering From Hyperhidrosis?
Posted by: · on June 2, 2010 | CommentsHere is an article I have written to give parents a “heads up” about hyperhidrosis in adolescence:
Adolescence can be an exciting, emotional, and confusing time in your child’s life as well as yours. As a parent, it can creep up on you… One day, your talkative, adoring, happy child seemingly morphs into a stranger. This stranger behaves as though you are the dullest knife in the drawer, is convinced you can’t dress to save your life, and is capable of eating every potato chip in the house in one sitting. Suddenly, everything about you is an endless source of embarrassment. You must drive in the car with all the windows up just in case your horrifying taste in music or a younger sibling’s voice causes your teenager to keel over in mortification.
All that aside, it is surreal and fascinating to see the physical changes taking place before your eyes! Everything is growing, changing, developing… there is a new game in the house: who is taller than who? Of course, along with these incredible changes usually comes an increasing self-consciousness. Self-consciousness breeds secretiveness. This is normal. You must become, by necessity, two parts detective and one part Nosy Parker. We need to stay on top of all the new dynamics in a teenager’s life, and that takes a lot of ingenuity and persistence.
One of the possible changes your adolescent may face is something that very few parents are aware of: hyperhidrosis. Hyperhidrosis, by definition, is a disorder that causes the body to sweat excessively or inappropriately. Some people develop this in early childhood (I did), but it seems that most cases of hyperhidrosis appear along with the changes brought on by puberty. There are several variations of hyperhidrosis: Axillary Hyperhidrosis (excessive underarm sweat), Palmar Hyperhidrosis (sweaty hands), Plantar Hyperhidrosis (sweaty feet), and CranioFacial Hyperhidrosis and Blushing (sweating and/or blushing of the face and scalp). The most common form of hyperhidrosis is Primary Focal Hyperhidrosis, which is a combination of sweating in the underarms, hands, and feet.
Can you imagine how difficult it would be to have this happen to your body at such a time? A teenager is already dealing with the physical changes of puberty, a new-found awareness of the opposite sex, and the emotional upheavals of hormones-gone-wild. Add to this mix the self-consciousness and secretiveness that accompany adolescence.
The upshot here is that your child could be dealing with the bewildering effects of a disorder they do not know even exists, and could be too ashamed to tell you. In fact, most people who suffer from hyperhidrosis live with it for many years without even knowing it is a medical disorder. I grew up with it and until I was in my 30′s, I thought it was “just me”.
The good news is that there are many others in the world who have this disorder– estimates are that it affects approximately 3% of the global population. Therefore, there are many treatments available, as well as chat forums and websites to be found where those who suffer from hyperhidrosis can go to find helpful information and to share their feelings and frustrations.
If your child starts to exhibit anti-social behavior, won’t allow you to hold his or her hand, sweats through their clothing, or acts depressed for no known reason, try to ask them why. Ask their permission to take them to see a specialist who can help them. For the most part, dermatologists can provide the best medical treatment for this disorder. However, not all dermatologists take hyperhidrosis seriously enough or are not experienced in its treatment. Ask before you bring your child to an appointment, because a doctor who belittles the problem can make things worse.
If you think your adolescent may be dealing with hyperhidrosis, please seek help and find out as much as you possibly can about the disorder. Above all, take it seriously. Living in a body that can “betray” you at any moment is embarrassing, scary and frustrating. Too many children suffer from this alone, in silence, believing he or she is a “freak”. It does not have to be that way.
Research on Hyperhidrosis– You can help!
Posted by: · on April 19, 2010 | CommentsThere is so little known about how and why people like us are afflicted with Hyperhidrosis. That is why I am so pleased to tell you that there is now a study being conducted that you can participate in! It appears that it takes very little time and effort to get involved. Here are the details:
Researchers at the Albert Einstein College of Medicine and Montefiore Medical Center are attempting to identify the gene or genes responsible for hyperhidrosis. Drs. Burk and Keller are collecting mouthwash samples and asking participants to complete a short questionnaire in hopes that this information will enable them to identify the responsible gene. Small amounts of DNA can be obtained from the mouthwash specimen and this information can then be correlated with the information in the questionnaire. They are hopeful that this knowledge can then be used to help create more effective treatments for this debilitating medical condition.
Individuals who suffer from hyperhidrosis, as well as both affected and unaffected family members, are eligible to participate. All information is kept confidential and travel is not required. The study kits are sent through the mail, and participants return study materials to the researchers in a stamped self-addressed envelope. If you are interested in helping with this research, please contact Betsy Vibert MS, CGC at their toll free number, 877-444-2525 or by email at betsy.vibert@einstein.yu.edu.
My “kit” is on its way to me. Once I complete the questionnaire and send it in with my sample (and my mom and sister too!), I will write a post about it.
Hyperhidrosis gets so little attention in the world of research– lets take this opportunity to find out more about this debilitating disorder! If they can figure out the cause, maybe they can find a real cure.
Thanks & as always Blessings
Charmaine
