Scleromyxedema
What is Scleromyxedema?
Scleromyxedema is a condition of mucinous deposition in the skin associated with monoclonal gammopathy characterized by a flesh-colored, papular skin eruption. The average age onset is 55 years and there was roughly equal distribution of gender.
Last updated 18 Mar 2013, 07:47 AM
18 Mar 2013, 07:47 AM
Hi Barb, You should go to scleromyxedema.com to get articles and find answers to your questions. Also, if you are on Facebook, the group is very active there on scleromyxedema. The group is closed and you will be accepted once you apply. Everyone is more than willing to discuss on both sites. My husband has had SMX since 2004 at age 52 and has been treated with Revlimid and Dexamethazone and is in remission but these meds tired him out. He was working during that time but it was not easy. He has other health problems besides SMX and is now on SSID. Thank goodness we have had health insurance through my job! Most members of the group are on IVIG as treatment though so you will hear more about how that is bringing relief to them. Good luck and prayers. Hoping the group can provide the help and direction from their experiences you can use. Sharon George
17 Mar 2013, 10:37 PM
I just wrote a note asking for information on Scleromyxedema. I would like to add my e-mail address. barbaraj564666@gmail.com. If anyone out there can help us with information please contact my e-mail. Thank you, Barb
17 Mar 2013, 10:35 PM
Hi, my name is Barb. My son, Joe, who is 34 was diagnosed with scleromyxedema this year. He has no job and no insurance. He has sores all over his back and fore-arms. He hasn't had any treatment. They gave him prednisone when he had an outbreak of sores but that didn't work for him. The dermatologist we saw did the biopsy and it confirmed scleromyxedema. Without insurance we don't know how to come up with the money to continue any treatment. My husband and I are retired and have limited incomes. Joe just received his CDL license and was hoping to find a job as a truck driver. Joe is extremely tired so much of the time we are wondering if he can hold down a job? No one on this site has said anything about working while having this disease. I would like to know if fatigue is part of the scleromyxedema. Joe doesn't eat much, has no appetite. Are these some symptoms of it. Any information would be greatly appreciated. Thank you, Barb.
Last updated 19 Apr 2010, 11:59 PM
19 Apr 2010, 11:59 PM
hello to the group. I am a concerned family member of someone d/x with scleromyxedema. My mom was d/x with the disease back in 2009 after seeing many doctors. Since, her symptoms have gotten drastically worse. It has been recommended that she receive IVIG but her insurance will not pay for it, we are in the process of appealing this. If anyone has any insight we would love to hear your story.
Clinical Trials
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
- Complete the screening form.
- Review the informed consent.
- Answer the permission and data sharing questions.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
Community Leaders
Expert Questions
Ask a question
Community User List
Start a Community
Don't See Your Condition On Rareshare?
Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.
FAQ
Have questions about rareshare?
Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.
Discussion Forum
Survivor's stories
Created by ernestdwolfe | Last updated 18 Mar 2013, 07:47 AM
Monoclonal Gamopathy
Created by mahaff | Last updated 30 Sep 2010, 05:43 PM
new to group
Created by dnovakowski | Last updated 19 Apr 2010, 11:59 PM
Our Communities
Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.
FIND YOUR COMMUNITY
Our Resources
Our rare disease resources include e-books and podcasts
Our Community Leaders
Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.