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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 Deeann on
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Chari - That is horrendous. So sorry you were treated this way. I agree with Rea, and also had some other choice words to say. I appreciate you sharing your experience. Although I am a white woman, I plan on sharing everyone's experiences with these nurses. Thank you again. If you feel like pming me the doctor's name, I would like to know who it is so I can steer people away from him.
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Permalink Reply by Chari on
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Thank you Deann, and thank you for creating this forum! I didn't realize how many people have negative experiences with dermatologists. Seriously, alopecia is a very sensitive condition, and patients should be treated with care! I cannot remember his full name, but I can tell you the location that he works from, because he worked at an HMO. I will DM you asap.
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Permalink Reply by Ally on
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My hair started thinning around 12 years old.I am now 58. I was diagnosed with hypothyroidism and started synthroid. All through my teens and up into my 40's my hair was on a up and down cycle. I would have several years of normal hair and then weeks or months of thinning. I would start and stop thyroid meds several times. In my early 50's the thinning became a serious issue and I started the rounds of doctors. I've had rheumatologists and dermatologists and internists all unable to come up with any reason. A top endocrinologist said I needed more thyroid meds. Everyone pushed taking Biotin. I have not met one single doctor who was sympathetic or helpful. Now my hair is mostly gone , very very thin and wispy. I reached out to my latest doctor for help and was basically told to get a wig and accept it. I would like to see the medical profession take an interest in this obviously big problem . Researchers are always looking for the cures for the big stuff but no interest in this issue. And maybe doctors could try to show a little compassion and see past the strong face we are trying to show and help with the depression that comes with this. This is a lonely disease... whatever it is.
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Ally - Thank you for sharing. I totally agree - sympathetic, helpful. I'm sorry you had the exact opposite of this. I have heard the "Get a wig and accept it." thing way too often from people. Although it is a lonely disease, please know that there is support out there. I have also had it a long time, and can tell you that having a connection with folks who understand makes a huge difference. Do you have a support group close to you? I'm happy to help you find one.
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Thank you Deeann. I don't know anyone else who suffers from this or know of any support groups in my area. I don't know if I'm brave enough yet to go to a support group anyway. After all these years I still haven't gotten to the acceptance part.
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I wish there was more emotional support. My daughter was diagnosed at 8 yrs old with AA. It's been up and down but nobody really addresses the emotional support AA sufferers need. She is 16 years old now and recently got a hairpiece so she could play sports without being revealed. She still hasn't shared her condition with her teachers/peers and it would so refreshing if just once a doctor would offer some kind of emotional support and follow up on it .
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hcib - Thank you for sharing you and your daughter's experience. I am sorry that emotional support has not been provided by your doctor or offered as a resource to you. Do you have a CAP or NAAF support group within your community? I'm happy to connect you with some folks where you live. I believe the best medicine is the support of others who understand and can walk this walk together with you (your daughter and your family). Please let me know. I'm happy to help.
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My son was prescribed foam cortisone, which didn't work. The Dr. told us if it was going to grow back it would have by the followup. He then prescribed a topical cream that I needed to use rubber gloves to apply to his head and clean out my shower after I washed his hair!! I was very uncomfortable putting something like this on a 2 year old. Since then, we have changed his diet, and also found some other things that have helped him keep and regrow his hair.
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Jperrotte - Thank you for sharing. So glad you listened to your instincts. I think so often when we are at our most vulnerable, we tend to not listen to the red flags. So glad to hear the diet changes have been helpful. Thank you again.
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On finding some hair loss I saw a doctor who referred me to a dermatologist, I then waited for an appointment for a biopsy that never came.
On my next visit to the doctor I left feeling demoralised, as he told me there's no cure for alopecia, and any regrowth can fall out again, this was before I was diagnosed!
Eventually I had a biopsy and was told I could expect to wait 4-5 weeks for a diagnosis.
I am currently having acupuncture for stress, which I love, as I am told stress affects the hair. All in all a very long process to diagnosis!
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Flower - Thank you for the timelines you shared. Glad to hear you are having some acupuncture, and that it has been a good experience for you and your stress levels. Take care, and thanks for sharing.
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Permalink Reply by Christi Q. on
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I have been disenchanted with both my dermatologists. They don't care at all and are just looking for a paycheck. One was very aggressive about me hopping up in her chair to get scalp injections. She is a very well known dermo too! I couldn't get out of there fast enough. Very depressing. I feel like I don't have anyone to trust or go to.
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