Alopecia World
www.alopeciaworld.com
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
-
Permalink Reply by Bonnie Piper on
-
Hi there
I was diagnosed with AA 3 years ago and for the past 2.5 years progressed into AT. I have had the most awful experience from start to finish and for me this is part of the problem. For anyone going through the transition of hair loss to total hairloss it is an awful thing to experience. I know many people say there are a lot worse things - but to be honest having gone through it and still going through it I don't think there really is anything more traumatic than hairloss as there is no cure.
So i first noticed 2 tiny little bald spots on my head and at the same time I was feeling quite ill and exhaused. The first local GP I saw said that I was a tired mum and sent me away with a self help book.
The second GP I went to looked at the 2 bald spots which were the size of a 5 pence piece and proceeded to print out 20 pages showing people through various stages of AA to Alopecia Totalis and said "I think this is going to happen to you. It happened to a friend of mine at university, she hates her life but you just have to battle on through"!!! I came out shaking and rang my mum and literally just broke down as I had never even considered that I had Alopecia.
Then I went to see a well know "expert" in Harley Street and when I walked in I was greeted by the biggest head of hair I had ever seen and hoped that he would share his secret with me. After paying £250 for 30mins he told me that he didn't hold out much hope for me and thought I would lose it all. He kindly advised me that if I wanted to take my daughter swimming just to bung on a swimming cap!!! He gave me a course of prednisone for 6 weeks and I felt pretty demented by this time.
So 2.5 years on I have given up on going to Doctors as the complete and utter lack of empathy has astounded me. I can not believe that something as profound as Alopecia you are literally left to your own devices. Nobody to talk to, nobody to help apart from money making schemers on line selling products that don't work.
Don't even get me started on my wig experience. I hate having this horrible disease but there is nothing to do but get on with your life in the best way you can.
After having this - my dream is to set up a safe sanctury only for people with Alopecia so that you can take your wig off and go to a spa day again with out feeling petrified. I would love to offer head massages, talking therapy and just have the chance to be pampered again.
Good luck at your conference- i only wish I had a positive story to share!!
-
Permalink Reply by Rascalx2 on
-
I really relate to your experience, the worst part of finding or figuring out you have alopecia is the research states it is a hopless disease and hair is probably not going to grow back. I still cannot get used to peoples reaction when they see me, or if I show someone what I used to look like. It is hopless and it is continuously an obstacle and hurdle to overcome DAILY in everyday life. I feel most people feel sorry for us alopecians, which I dont want pity, but I can feel their energy of "shit Im glad I dont have that"
-
Permalink Reply by Deeann on
-
Bonnie: It is disheartening to hear your experience, and I'm sorry that you went through all of that. Were you offered other options (other than the swimming cap), wigs... - were there any support groups or Alopecia UK that were suggested to you? I think it's a fantastic idea to have a day spa experience to offer specifically to those who are experiencing alopecia. You're onto something!
-
-
Hi
I was offered no help what so ever. No advice on support groups my mum and I literally did not know where to turn next. Some days I wake up and I am fine with it but other days I get so sick and tired of having to live a lie as I don't feel comfortable going au naturel. It's just one huge pain in the arse as you have to think about everything before you do it!!
However the one thing I would say - I have a freedom piece and it has given me my life back and no -one unless I tell them would ever know.
I just hope they put more effort into R&D and find a cure as it would be good to have hair again at some point in my life. Here's hoping!
-
-
Thank you for sharing this information. I'm glad to hear you had a compassionate specialist. Do you feel you were given everything you needed for options, including support (Alopecia UK, books you could read, people you could reach out to...)?
-
-
PeteCrowe: Ugh. So sorry you have had to deal with all of these in this way. I really appreciate your feedback, and will share this information generally to the nurses I wish to reach. Thank you again. Please continue to meet others with alopecia. I know for me that was the biggest thing I could have done. Best wishes.
-
Permalink Reply by Jess on
-
I was diagnosed yesterday w androgenetic alopecia. The doctor in Boston was arrogant and just like listening to himself talk as he showboated for his student. Gave me very little info on the disease and stated everyone has hairloss and thinning by their 40's and gave me a shampoo to try and rec. rogain if i want to commit. He never told me what to expect w alopecia and of course now im googling everything in a panic. 3 other derms this years assured me I dont have alopecia. All he did was look at my follicles, no additional tests... he blames genetics. Is there any homeopatic intervientions that help. I dont trust what derms say and rather try natural remedies...
-
-
Jess: I'm sorry for the way things were handled yesterday in Boston. Regardless of your diagnosis, hair loss is hair loss, and should be treated as a loss from the doctor's standpoint. Please know there is a great deal of support out there, here on AW, as well as on Facebook pages that are great resources for people looking for solutions and support. There are also support groups in Boston.
-
Permalink Reply by RossG on
-
The two I saw were both empathetic and they took time to explain the basics of alopecia areata, but i sensed they were eager to move on to patients they could actually help. Of course it was kind of frustrating to not be provided a solution, but there isnt one. I don't blame them one bit. Their time is better spent on the patients with treatable illnesses. The doctors who can help us best, in person, are probably in the mental health field. But hopefully the doctors we don't see, those researching the disease, will find a cure one day soon.
-
-
I was 4 years old when I was diagnosed. I don't remember that first appointment at all but I remember appointments after that. All the nurses were always great and my doctor was so sweet. I've been seeing this same doctor now for nearly 20 years...she's like a second Mom figure, lol. I really like my doctor the only down side is that it takes months to get an appotment. My hair is falling out more rapidly now then it has since I was first diagnosed but I have to wait almost 3 months to get in to see her. I've thought about seeing another doctor but I've had such a good experience with my doctor that I'm going to wait till I can see her. Hopefully my hair can stick around a few more months! Fingers crossed!
© 2024 Created by Alopecia World.
Powered by
