Acromegaly Support Group

Appearances....I was never one to pay much attention to my appearance... don't get me wrong I was not a slob or anything but let's just say I dress comfortably...after my husband died, I started wearing his clothes/shirts socks stuff like that...I also gained about 40 libs in the last 4 years...but like I said I just thought I had to work harder at my diet...I recall looking in the mirror and not recognizing myself and thinking "is this what grief looks like?" anyway it wasn't till I got diagnosed this august that now when I look in the mirror I see all the acro symptoms...i hate my clunky feet...i get discouraged trying to find shoes, and I hate that I have no will power and can't seem to stop eating sugar ..so now I am more self conscious..I don't like to have my picture taken that started about 2 years ago ...but I had not put two and two together....so I try to be kinder to myself...try to take more interest in dressing a little nicer..but have not heard of anyone who did anything about the bone changes...as you can see I still haven't the courage to put up my picture...actually I also don't have hte smarts...don't think this answered your question but maybe it explains that I think at some point we all feel bad about the way we look...with or with out acro...I acutally think now that I physcially feel better I am getting my confidence back and my appeaance will reflect that...at least that's tonights theory...:)mctrjt

Hi Bec74 This is good to talk about because acromegaly puts us all through it.Our state of minds and can change how we look.It is an unforgiving condition.I work in a very male environment and to be honest give the male population their due they are very good I look a mess am dusty because I crawl on floors.Its a waste of time even putting lipstick on.I have found they are more intrested in you making tea and their drill is better than my drill lol. Than what I look like.I battle more with some women they think because you are in a mans world theres something wrong with you they judge more on how you look it can knock your self confidence quite easy which is life in general we are judged by how people see us or how they think they see us.I can only be myself if someone judges my appearance then thats their problem I am not going to hide to please them or not do a job I love.I understand how you must be feeling we dont want to seem different but different can make us more interesting.What model do you see is really happy.I am sorry like mctrjt I am not answering your question on treatment because I dont know but what I am saying is please dont give up socially to genuine friends and people they should like you however you look.

Hi Bec,

I just thought I'd add my perspective, but unfortunately like the others can't really answer your question on treatment.

My acro seems to have kicked in after I had my daughter and like mctrjt I looked at myself in the mirror and just thought "well I never put myself in the 'had a baby, get fat and middle aged' bracket!" but never thought anything of it. I hated looking in the mirror so consequently didn't wear make up and dressed terribly. I have been very lucky cause I was diagnosed early and have since had *fingers crossed* successful surgery and my facial features have returned and my hands and feet seem to be on their way back. I can finally resist sugar (in fact it hurts physically in my hands and head if I eat too much!) and am down 2 dress sizes. I know you are all thinking "I hate her!" but I wanted to add that as well as being in constant fear of it not having worked as well as they hope, I am also already finding fault with my appearance! I am down from a top end 18 to a top end 14/16 (that's english sizes!) and for about 2 months I was impressed with what I saw everytime I looked in the mirror! Already I am looking thinking "hmm I could do with losing a bit of weight"!! Women's heads are cruel things. I know my confidence was seriously knocked when my appearance changed but noone else saw it. My Dad keeps a photo of me before surgery to remind himself what a blessing it is that I'm ok. I can't. I can't stand any photo taken in the last 2 years+.

I hope you can find some answers or can come to terms with this cruel illness. Lots of love and prayers, Kate x

All these replies sound just like me...never taking any pictures. I just now have been taking pics with friends.. down 47lbs. I was wondering about cosmetics as well, like my skin is thicker( like almost sun damaged looking ) and I have tons of skin tags now. Some are right around my bikini line( don't worry I won't be wearing a bikini ) but I'm self consious around my husband ( these skin tags need their own zip code) HUGE!!! Check into Invisalign braces( they are the clear trays that you can wear without anyone knowing and they could maybe fix the issues in as little as 6months. Talk to a good board certified facial plastic surgeon ( I am not suggesting surgery) but just for advise and input to anything that might help or improve with time. I know my facial appearance is still not back to normal but I can see real improvement all the time just with soft tissue changes. My neck is half the size it was pre- surgery. I will post some photos after surgery but like back in May 07 so you can see.

i understand how u feel.i dont really like to be photographed either.since being diagnosed my ring finger has went from a size 8 to a size13. and shoes are hard to find i wear from a 10 to a 11.the cute kind anyway.and my lower jaw is out farther than my top. Im planning though to have surgery to push it back and get it alligned with my top.i hope that helps you a little.

Bec, I have worn braces twice in my life..Once I got them when I was 16, the last time I was 40+. My teeth went nuts moving everywhere and my jaw too. I would not hardy bite things so got braces at 40+ . I had worn a splint because of jaw pain for several years,All this was before I was diagnoised.I was really proud to have nice teeth.Now after my surgury and the gum swelling all went down my teeth are all moved again. I am going to talk to my dentist and see if he has any suggestions. I really don't want to go the whole route again at my age.It makes me sick to think of all the money and time I waisted.I would like to keep up with you and see what you do if anything about your teeth. My jaw is not protruding any more.DEBBIE1253