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Feedback about your experiences with doctors and nurses when first being diagnosed
Hello there. I am wanting to hear some of you or your child's experiences with doctors and nurses that you are willing to share for an upcoming dermatology conference I will be speaking at. Please share your good and bad experiences, what your expectations were when you made your appointment, how long it took to see a your doctor or specialist if that applies, and anything else you wish. Thank you in advance. I appreciate all your help.
Replies to This Discussion
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Permalink Reply by Ally on
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If you feel like you need to vent or just need someone to listen. You can message me anytime. I've heard every well meaning stupid comment people can make when they have no idea what this feels like to live with.
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Permalink Reply by Deeann on
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Christi Q. - Thank you for this feedback. It does often feel like that's what it's all about for sure. Were you offered any support group options with this doctor? Do you feel that would be helpful for you? Feeling alone in this is not how anyone here wants you to feel. We all understand.
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My hair started falling out, just one little patch, in the 4th grade. My parents took me to a dermatologist bec we didn't know it was a internal medicine/immune system problem. He put a little quartizone cream on my head and my hair grew back. But then in around 7th grade it all stared to all fall out and I spent the next 3 years in junior high school hell. My parents bought me a wig when I was 15, but high school was not much better. I did not go to a Endrocronologist until I was about 18, where he told me just what it was and that there is currently no cure. That was in 1974 In any case I made the mistake of hiding under a wig for 35 years until I finally took it of about 10 years ago. But one cannot hide the fact that I have no facial hair eye brows or eye lashes etc. However, the biggest problem about this condition is the ignorance and responses of various pep over the course of my life in college, work, etc. Its one thing to be naturally curious. But the other type of ignorance is when pep who don't know why you look like you do make derogatory remarks about you behind your back to your face etc. And this ignorance knows no age limit. So the problem, more than the hair loss (I have had alopecia universalis for over 45 years) is the damn public!!! Just because I have grown up does not mean the rest of the world does.
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Mark S. Hansen - I'm so sorry your experience dealing with the public has been less than stellar. I have had alopecia for almost 40 years, and after publishing my book about alopecia, truly realized that raising awareness will save us all in the end. I will work hard to help make your experience better by continuing to raise awareness and share your message. Thank you for sharing.
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I am so sorry you have gone through that pain all these years. I have often thought how easy for a man to have this disease or ( Thing) I call it. And I realize after reading your post that it's not any easier for you at all. We all have to deal with this in different degrees of pain and acceptance. I think the medical profession is useless and unsympathetic. I have noticed that cancer patients get sympathy and empathy and public emotional support. ( I'm not disparaging cancer sufferers. They deserve all the support they get) But this " thing" gets second looks and rude remarks. Even well meaning rude insensitive remarks. Hang in there Mark S Hansen... we are all here for you. Someday someone will find an answer. Right??
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Permalink Reply by Matt1 on
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So I'm in Canada not sure if it's the same other places or not, but my experience goes like this. I have 2 family doctors I went to the first doctor and he told me right away with out any tests that I have alopecia, he didn't mention there were different types so I was like ok. I asked him if it's treatable and he said yes and that I would have to see a dermatologist. After waiting for 3 weeks to see this dermatologist I went into her and the only treatment offered was of course steroid injection. I didn't want this type of treatment so I asked if there are any other options? I received a strange look and rude answer stating that no there's not!
On to the second doctor, I went into him and was told basically the same thing that I have alopecia and he would run some tests after getting 2 blood tests for coeliac disease and for alopecia both return negative.... at this point I'm pretty lost and wondering wtf is going on so I then again ask my second doctor for a referral to another dermatologist, this dermatologist being the best in my area had a one year waiting period to get into see him. So in the meantime I decided to take matters into my own hands and research the shit out of alopecia and before my dermatologist appointment a year later my hair was already starting to grow back so I obviously cancelled the appointment and now every once in a while I get a few patches here and there but I've totally change my diet no longer eating processed foods and supplementing vitamin D and biotin. So in conclusion my experience with doctors and alopecia was terrible and I have a feeling they have no idea about this a disease. I would honestly recommend anybody that has patches of hair loss to yes go to your doctor yes get Tests but don't think in anyway shape or form that they can help you at all. Seems to me they are very clueless about alopecia. The best part for me in this experience was researching for myself to find what works for me with actual results. Dermatologist in my opinion are treating only a symptom of a greater dis ease.
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Matt1 - Thank you for your feedback. I'm glad you were able to figure things out on your own with diet, vitamin D and Biotin, and also sorry about your experience with the dermatologists you went to. So far, I don't think your Canadian experience is much different than that of those in the states or in the UK. Thanks again for sharing.
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Less than one year ago my 16 year old son began experience hair shedding, enough that he told me about it. Shortly thereafter he began losing clumps of hair. We took him to the dermatologist who diagnosed him with alopecia and offered him steroid shots (he declined), steroid pills(I discouraged it because of acne/immune weakness) or Clobetasol foam (and later an acid type of topical.) He chose the foam and eventually developed a terrible yeast infection on his back and shoulders so he had to discontinue it. He had since shaved his head and began losing eyebrows, eyelashes and body hair...all within about 4-5 months time. The dermatologists were straightforward and appropriate. Honestly, alopecia seems to have such a tricky to predict path that I don't hold it against dermatologists to have the conversation of, "You may lose all of your hair within 6 months" to every patient who crosses their door. There are probably many who have the condition resolve that we don't hear of and why scare people needlessly.
My issue with the dermatologist is that a university only 15 miles away is doing research on alopecia and has a dermatology clinic devoted to hair loss who prescribed my son Xeljanz...and he is having good results so far. Eyebrows are full, eyelashes growing in, I noticed leg hair growing and the one time I saw him without a hat at the doctors office 2 months ago, he had 50% hair growth. Since he is going to college in two months this is significant.
I found this medical center through conversations with other people. It should have come from the physicians. The initial dermatologist was out of their league, in my opinion, and if none of their suggested treatments were effective, they should refer to outside facilities that offer more. And if they are unaware of these other more advanced sites, they aren't involved enough in the community to be treating them at all.
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Christopher's_mom - Thank you for sharing your experience. I hear you when you say they were "out of their league" and should have referred you elsewhere. Although they want to help, it is important that they remove the ego from it all, and refer you to someone more experienced to help, especially if it's 15 minutes away. Thanks again.
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My daughter is 16 year old and has had alopecia since she was 14 years old. It has been such a difficult time for her to cope and overwhelming for me to see my daughter deal with alopecia. I am grateful that we have had amazing support and an incredible team of doctors! They give her hope and encourage her. Each time they have shown her that they care about her and finding the best treatment for her. My daughter has been severely depressed over the changes in her body. It has been hard and she has been so strong! I am grateful for the attention, compassion and care her doctors give her.
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Rocky - Thank you for your positive feedback regarding how you feel about your daughter's team of doctors. I hope she is also getting support from a local support group if there is one in her area. It's nice to have others who understand. If you need help with resources, I'm happy to suggest a few.
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