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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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Lucy - Thank you for following up. I appreciate all of the work you have done for yourself. I hope you do go to the support group. In my experience, it takes more than 1 person to lead an effective group - different perspectives...
Best of luck getting a good night of sleep, feeling less stressed, and with trying this new treatment. Feel free to add anything you wish. I'll be checking back often and still have a few months until my presentations.
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Permalink Reply by Dorothy on
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My hair started falling out within hours of giving birth to my now 44 year old daughter, the doctor told me it was due to the anesthetic, my question to him was how was that possible since he was not there in time to give orders for me to have been given any meds before my daughter was born. His reply was a stupid look on his face and he walked out. Each doctor I went to in our town, the Cleveland Clinic, the Mayo Clinic and the medical community after my husband joined the Air Force was always in the end they did not know what was wrong, I did not even know what the name of the disease was Alopecia Universalis or that it is an autoimmune disease until I figured it out as NO doctor ever gave me a name of the disease. The worse doctor I went to at age 19 and when he saw me in the exam (I mean RAN) out screaming to his fellow doctors to run quick to see his patient because they would never see a patient if they practiced for a million years. Of course this increased my feelings of being a freak. I have had this for 44 years, never any regrowth except when my husband was stationed in the Netherlands and a Dutch doctor put me on mega doses of thyroid, to bad we had orders to come back to the USA before we had a chance to see how much the meds would work, no American docs will try.
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Dorothy - I am so sorry you had all of these experiences and that your care and education of alopecia was so appalling. The fact that you didn't even have a name for it from well-respected clinics is equally appalling. I appreciate the information you shared, and will use it to help all of us in getting better care in the future. Take care.
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Permalink Reply by AndreaAlexandra on
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Permalink Reply by Tiffany Brosch on
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Hi, my name is Tiffany Brosch and I've had alopecia for more than 20 yrs. It started when I was 12 and my mom thought I was trying to slowly shave my head. Then the hair came in white. (I wasn't shaving it.) I lived north of Chicago then it was 1992. We went to every doctor and specialist in the area. It took a trip in 1994 to New York to a dermatologist out there for th em to diagnose me. By then I had lost every inch of hair on body. My experience was miserable with all the treatments the did, none of which worked. I am now 37 and proudly bald and wouldn't change me for anything. Unless it keeps me warm, cause I'm always cold. Good luck and I love this sight. I know I'm not alone.
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Tiffany - Thank you for sharing. I'm sorry to hear your experiences were so poor, and glad you are happy with where you are now (without their help). Not feeling alone is a big deal, one I discovered after finally meeting someone else with alopecia after 30 years of dealing with it on my own. Thanks again.
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hi, i was diagnosed with alopecia areata and you know there is no cure about it ... i ve tried visiting the best dermatologists in the country but nothing helps...
i found an alternative medicine maker , who showed me before and after photos of many of his pacients.
I bought his serum he adviced me to use it every 7 days .I used it twice and now my little hair are showing up.. he inherited his medicine making reciept from his ancestors and he has so many paients ....
im so happy that I found him I USE MEDICINE only two times
and results are fantastic ....
i will recommand all of you not to see doctors they do not know about this autoimmune disease ... this serum works great in any person ... the lines waiting to see this "doctor"are large waiting for hours to buy his product ... he sell in small quantity as result is so fast ...if you wait for doctors to help all the hair will be falling down ...
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Permalink Reply by Rascalx2 on
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Omg tell me tell me Ill buy whatever your selling get in touch with me at nicetryjerky@baldnesssucks
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Great response Rascalx2. I wish I could remove it. I found a cure ! It really works probably shouldn't be allowed on to AlopeciaWorld at all.
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Permalink Reply by Chari on
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My experience was pretty upsetting. My doctor blamed it on me and said that it was a result of hairstyles that Black women wear. I explained to him that I hadn't even used damaging styles to my hair. He later asked me why did I take so long to see a doctor and noted that it could just be because I had lousy skin. I reported him shortly thereafter. I've only been to one other dermatologist since. I now do my own thing. I don't need to hear that there's no hope and be accused of contributing to my hair loss. Thanks but no thanks smh.
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Excuse my language Chari but that is some real bullshit!! I am a woman of color and had never used damaging products neither. So happy to hear you reported this foolish doctor. Having alopecia is hard enough, we don't need racial ignorance added.
Hope you are in a happy place now:)
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Thx Rea! I am doing much better now. I was initially very upset, but I'm good. This was several years ago, but I've been battling alopecia since I was 23 yrs old (I'm now 32). I've noticed a connection between my anemia, stress, nutrition, and hair loss. I'm also a grad student so I experience A LOT of stress. I still haven't given up hope and I still fight this. Thank you for the support. Yes he had some serious nerve!
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