Dental problems in Sceloderma

[Amine]

I have a sister with Syst Scleroderma aged 23 years old and with difficulties accepting her disease. I cannot see her writing in a forum as refused in past. teeth loss has been a major upset for her and recently weight loss also. We have been fighting for few years now-she was diagnosed when she was 15-. She is devastated about losing the front lower teeth and even at guy's hospital dental dept could find her a solution because of the small mouth and the severe gum disease. It is heartbreaking and i don't know what to do? she lives with me and we have ups and downs but no the disease ravaging your gum and teeth makes things difficult. I am supporting her and i feel very hopeless and useless at times.

Thanks

Am

[acjoseph]

Its a sad story I can relate 2, I was diagnosed aged 5 im 35 this year. The countless trips 2 & from hospitals, Drs pokin proding pulling but not giving any definite answers... still at this age I haven't acknowledged my situation (its difficult 2 explain 2 non sufferers) I used 2 wish I had cancer or was in a wheelchair so people wud accept me.. I hate the phrase "u should b grateful to have got this far" purely because I truly believed I didn't deserve this thing called life.. I get by using the ostrich in the sand approach. I do wot I can when I can, try 2 make it thru the day the best my mind and body will let me

[acjoseph]

Im not sure if my post helps (im kinda new 2 this sharing stuff) Having 2 cope with multiple set of teeth due to steroids mouth tightening at rapid speed hair loss and basically morphing into a complete stranger is a terrifying ordeal... numerous consultants said I wudnt make it into double figures I wud definitely be wheelchair bound and under no circumstances would b able 2 have children. sadly I ignored all their reports am still trudging along and have a beautiful healthy intelligent 8yr old

[acjoseph]

Please don't give in...on paper its complete doom and gloom..support ur sis on her bad days, don't take hostility or exclusion 2 heart and try 2 end every day knowing u did wot u cud... I wud like 2 keep in touch [e-mail] if u or ur sis are interested

[Amherst]

I would suggest a referral to Stephen Porter, who is Director and Professor of Oral Medicine of UCL Eastman Dental Institute. He has a clinic for people with scleroderma and is aware of the problems. If your sister would like to discuss, ask her to call my Helpline 07530 810 964 Hope this helps.

AM

[judyt]

Hi,

I don't really have much help to offer you because I live in New Zealand but I did approve your post on ISN this morning so have had all day to think about you and your sister. Through other contacts online I have been thinking that like the above poster I would suggest you try the Eastman Dental Institute and also Prof. Denton who is at the Royal Free in London. It does seem a bit odd to me that she has not been offered any other Immunosuppressant

meds. You said she reacted to one but as far as I can see from various other folks there are several that could be tried. Please see what you can do to get her to Prof. Chris Denton for a second opinion if nothing else.

[Hidden]

I am so sad to know this. My Scleroderma was not diagnosed for thirteen years. ( I have now had it for 23 years). My teeth were a real issue and I had gum disease which I could not cure even with brushing and flossing and mouthwash. My dentist referred me to Guys dental . They said I had some flora and fauna problem and needed to look after my teeth twenty times better than others. But on a couple of occasions I was treated very badly there and made to feel as though I was not trying with my oral hygiene. It was highly embarrassing and I felt verbally abused. Infact I was.

I now of course realise all this is due to Scleroderma. But I elected to have my lower teeth extracted only a year ago as they became too painful to bear any longer. I have most of my top teeth still and am 64 years. Even at this age I am very upset to have false teeth so I can imagine the devastation that your sister at her young age is feeling.

There are antibiotics for targeting gum disease, and a post here points you to the Eastman dental clinic which I feel certain your sister would have no problem being referred to in the light of her Scleroderma being the cause of her gum problems.

It is a tragedy she is so badly affected at such an age when she should be enjoying her life to the full. You are a good sister to her coming on the site to try to help her. You can only help up to a point though and must not take on the task of finding a miracle even though I know you would so like to.

It must be extremely upsetting for you as we'll as her. On the subject of weight loss, I have difficulty keeping weight on too. I do know others have had a course of steroid treatment which has helped a great deal. I assume she is under a specialist? They can find the right course for her .

Encourage her to join this site because all here are very supportive and can offer all sorts of advice. Otherwise this is a very lonely disease since there are relatively few sufferers. Apart from hospital visits I never come across anybody else with Scleroderma, and people just don't understand the severity of it.

My heartfelt wishes for you both.

[titanicus]

My heart goes out to you and your sister, I'm lost for words. Scleroderma at such a young age is a cruelty of life. I lost all of my top teeth to small mouth over the last 12 months. There is no cure at present, and the only advice I've received is to use mouthwash regularly to combat bacteria due to the autoimmune situation.

There are many people on this forum who will be able to point you in the right direction, as regards advice/information. You can share your pain/frustration/anger et al, and at least offload some of your worries. God bless, take care.

[Basset]

Hi, I have dental problems as well, not too severe at the moment but my mouth is getting smaller and my gums are receding fast and I am terrified of loosing my teeth, I have lost one upper front tooth and 3 years on it still bothers me (it is bridged). My dentist is good and I go to the hygienist every 3 months, it hurts but it is worth it to try and keep my teeth for as long as possible.

It is hard accepting your lot in life, I kind of do what acjoseph does, bury my head in the sand, keep it to myself, pretend I don't have it, for now I can just about get away with it, hide my hands, avoid hills as I have lung involvement and try not to laugh to hard as I end up with a fit of unattractive coughing!!!

You sister should join this forum, it helps so much with not feeling alone, you can unburden yourself on here and not have to bothered your friends on family too much, which always makes me feel guilty, they are so upset about it so I don't mention it now, can't deal with them crying all the time (diagnosed 7 years and my Mum still cries everytime she see's me!!). I don't have problems with weight loss!!! I am on steriods and immuno pills, Mycophenolate which has really helped calming things down, but it will always be a slow (hopefully) progression.

Keep strong, you are amazing and would love to have you as my sister. Welcome to this forum.

Sam x

[Skwiglee]

I had a really tight mouth. And had trouble even pushing a grape in. I had hot stone massage on my face, only once. I can now smile, laugh and stuff my face - as my expanding waistline can attest! Don't give up.......go alternative! It's worth the £25 just to try it, and totally blissful.