Our daughter and a mother of little children was just diagnosed with diffuse systemic scleroderma and our family is reeling in knowing what to do and how to help her. She is in so much joint pain. We are heartbroken. Where do we even begin?
New Scleroderma Diagnosis.
Posted 29 October 2006 - 09:47 PM
Begin by learning as much as you can about Scleroderma. Your daughter will let you know when she needs help. Be there for her to lean on you and to cry with you. This group can help with just about any questions you may ask. Hopefully, her doctors can get her on proper medication to help with some of the painand swelling. Keep us informed on her progress. Sheryl
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)
Posted 30 October 2006 - 03:05 AM
We are so glad you are here, but sorry it is because of your daughter's diagnosis. It is very scary and overwhelming at first, but as Sheryl said, one of the best things you can for your daughter right now is to learn as much as you can about the disease. I don't know if you have had the chance to look at all the information on your Sclero A to Z web page, but here is a link that will get your started: http://www.sclero.or...rma/a-to-z.html
Here is another that discusses many of the symptoms and treatments for each: http://www.sclero.or...oms/a-to-z.html
I hope you find this information helpful. I am sure you will find everyone here very warm, encouraging, and supporitive and eager to provide information and advice as we can.
Posted 30 October 2006 - 04:29 AM
Posted 30 October 2006 - 05:17 AM
It's good to have you here with us. You can give her support (in all aspects), guidance, encouragement and lots of love. She is going to need you when she feels like she can't go on anymore. When she feels like crying, let her. When she vents, let her. That's how she will cope. Then she will ask for help and you will be there. Seek and search this disease thoroughly. Never let the doctors give her or you the run around. Learn as amuch about this disease and possible progression with the disease as much as you can. If you ever need to talk personally, feel free to email me. I have been battling this disease since I was young child but wasn't diagnosed until I was 19. I've been through and seen much. I'd love to help in anyway that I can. Be encouraged and never loose hope. It will get better in time.
ISN Book P.R. Coordinator for the U.S.
International Scleroderma Network
Posted 02 November 2006 - 06:45 AM
I'm sorry to read about your daughter's diagnosis of scleroderma and the joint pain that she is having to deal with. Since she has been recently diagnosed, I would recommend that she see a scleroderma specialist. Rheumatologist are great for on-going treatment, but there are not a whole lot of them out there that know a lot about scleroderma so for many, it's a guessing game. Here on ISN we have a page on scleroderma specialist worldwide. Hopefully you can find one in your area. It's really important that she see someone that has experience with treating scleroderma and not someone that hasn't seen it much.
Please keep us informed as to your daughter's health and appointments. If you have any questions or just need a hug, you're in the right place.
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)
Posted 02 November 2006 - 08:02 AM
Take Care...my heart goes out to you and your family.
Posted 02 November 2006 - 09:46 AM
I'm so sorry to hear of your daughter's diagnosis. I'm sure she and the family must be confused and overwhelmed. I remember very well when I was given my diagnosis. I had never heard of scleroderma and after reading some, I was sure I had received a death sentence. I would suggest:
- get an experienced rheumatologist who can follow her regularly and who you have confidence in. I have found a great variety in level of knowledge and care, even among "top" rheumys. I went to CA and and was diagnosed by an expert (even though his name is not on the ISN list). He is a prof at UCLA and author of several books. I later saw the head of Dept. of rheumatologist. at a medical school in my state. He was very vague and I felt he blew me off. I found an excellent local rheumatologist who is as smart as any "expert." However, one of her partners, didn't even think I had scleroderma! He was the doctor social security asked me to see. Well, there was so much documentation & personal letters from my other doctors, SS actually approved my disability within a couple of months! I now see my "expert" in CA once a year and my local rheumatologist regularly. They work together. I asked my PC doctor who the best rheumatologist was in town--that's how I found her. I need someone locally who will see me quickly, do labs, tests and coordinate my care with my other doctors.
- learn as much as you can. This website is fabulous for info & support!!! You will find hope and direction. I don't know what I would have done without this site.
- keep doing what you are doing--let her lean on you. Help her walk through this. Remember, everyone has a different way of processing a crisis. I wanted to learn everything ASAP. My husband and sons were somewhat in denial. It was difficult for them to accept and that was hard on me. I knew they adored me and were very attentive when I was sick, but I felt alone at first, because they were not interested in knowing about scleroderma.
- help her stay connected to life in spite of her illness. But of course, recognizing she may be so sick that somedays all she can do is sleep.
- help her manage & coordinate her medical care. She may be so sick she can't take the initiative. It can be overwhelming.
May many blessings come your way,
Posted 02 November 2006 - 11:31 AM
I am sorry to hear of your daughters diagnosis. It is hard to hear, and scary to read the statistics on the web, but keep hoping for the best! Every case is different, and there are a lot of great people and doctors to help you through this. It looks like you have received lots of great advice already.
I think that your daughter is very fortunate to have a mom that supports her diagnosis and is interested in learning about her disease.
Posted 02 November 2006 - 12:32 PM
We thank you so very much........