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. 

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I went to a dermatologist when it got worse. Steroids, ultraviolet, infra red, had it all. He told me the reality is that there was very little research being done because people don't die from alopecia and I should just keep my eyes and ears open for developments in research and treatment successes. Now I am a retired University Librarian and still hoping. But mostly it is something I have left in my rear view mirror.

Tandelor - Thank you for following up. I appreciate all you have shared.

Hi, I've had 3 different experiences with Alopecia. 1st was Alopecia Areata, I was 19 and my dermatologist injected cortisone shots which grew back my hair but I'm unsure to date if it was the shots or it was just luck. 14 years later my hair fell out a 2nd time but this time it was Alopecia Universalis. My GP told me her neighbor as a kid had it but her hair never grew back but still referred me to an Alopecia specialist (wait time 9mths). The visit was a tremendous disappointment as this doctor had no empathy nor any common human decency whatsoever. She told me my hair will probably never grow back but atleast it's not cancer and only a cosmetic disease that I can cure with camouflage!! Then asked if she can get the name of where I get my wigs from so she can recommend to her clients:( My heart was broken and I walked out of the office in tears. I decided to visit an Naturopath who gave me a herbs head mask and my hair grew back for the 2nd time. Again unsure of it was luck as my hair fell out again 2 years later bringing me to today. I currently do not have any interest to visit doctors. I wear a Freedom wig, microblade my eyebrows and have a thin line tattooed around my eyes. Life is much easier today:) Thx, Rea
I started seeing my hair all over the bathroom floor so I immediately made an appointment to see my Dermatologist and he told me not to worry he's never seen a bald women before!And he's in his 70's!I then made an appointment with my thyroid Doctor and she told me about Alopecia and did blood work.I left her office feeling pretty depressed but at least I got a honest answer.

Thank you for saying you appreciated the honesty. Even though it wasn't what you wanted to hear, at least there was that. I'm shocked your dermatologist said that though, especially considering his specialty. When was this, by the way?

Rea - Thank you for sharing your experience. I'm sorry it was such a poor one. It's good to hear you saw a Naturopath, and like you said - who knows. It may have been timing/luck. I have no idea what prompted regrowth for me after 7 years of totalis, but it happened spontaneously (without medication, change of diet...). So glad you have found a more relaxing place with your all of the great resources that are available. Thank you again for sharing.

Hi  there,

SO happy to hear you are keeping this discussion alive by speaking at the conference. If it were up to me, I would tell them to stop taking appointments for alopecia patients knowing there really is nothing they can do. At this point, it is unethical to continue giving alopecia patients hope by medicating them with temporary fixes. Tell them to put their time into research as everyone who has done their due diligence knows there is no cure.

Good Luck!

Kal - Thank you for your for your heartfelt opinion about this. I agree, our autoimmune disease should be treated just as seriously as others.

Thank you Patty. I appreciate your advice.

Hi
I myself have had great support from my GP and also from the staff at the dermatology department at the Queen Elizabeth Hospital in Glasgow. I have alopecia universalis. I do not have any hair whatsoever including eyebrows and eyelashes. At the minute I am attending the hospital where I am receiving DCP treatment. I have also now found my wig dresser(aka hairdresser) Lisa at parruche in Glasgow who has helped me with my wigs and I now have a wig which has given back some of my confidence. Don't get me wrong I don't think there is a lot of information out there regarding alopecia and it is a debilitating illness so every bit of support and information is crucial to the well being if each individual. There is no miracle cure for hair regrowth and I feel sorry for people whose experiences with doctors etc have been bad but me personally I cannot fault my doctor or the team at the hospital.my hair started to fall out in October 2015. My first appointment with the dermatologist was in February 2016 then a follow up 6 weeks later taking me up to April 2016. I then had to wait until 8weeks ago to begin my treatment which only has a 30% success rate but I'm willing to give it a try as it's the only thing that has been offered to me to try and encourage my hair to regrow. In the meantime I have a good wig,eyebrows tattooed and next on my list eyeliner tattooed. I am coping at the minute with my illness having good days bad days ( glad to say more good than bad now) but I have also had the help of a counsellor called Kathleen from lifelink. Hope this helps.

Lucy - Thank you for your insight. I'm glad you are finding your way through this with a helpful GP and that you are having more good days than bad. If you don't mind saying, has your GP suggested other resources available to you, local support groups, Alopecia UK... - or are most of the suggestions treatment related?

Hi Deann. To be truthful I think it's unknown territory for my GP however during the 7 months I was off work when I had ( and still have) disturbed sleep I was googling everything to do with alopecia and hair loss. Everything from how to apply makeup to disguise the fact you don't have eyelashes,to getting eyebrow/eyeliner tattoos, wigs, supplements etc. I joined this site which gave me encouragement but also made me realise that I was getting to a good place in accepting my alopecia as oppose to others who were having horrendous experiences. I found out about a local support group set up by a girl who was struggling to find any support so decided to form a group herself. I haven't been to a group meeting yet I keep joking with the nurses at the clinic that I could do something like that myself as I'm quite a chatty person. I keep thinking if I don't get stressed out about my loss it may help my hair to return although we never know do we? I'm trying the DCP treatment which has some side effects but nothing too drastic so fingers crossed x thank you Deeann for taking the time to gather information from fellow alopecia sufferers in an effort to try and make people aware of this condition and the effect it has on sufferers x

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