More Rare Diseases Answers
Question Library
Ask a question about Rare Diseases
Volunteer
Experts of the Month
Expert Login
Awards
About Us
Tell friends
Link to Us
Disclaimer
|
| |
|
|
| |
| | | |
About Tina
Expertise
I can help on all aspects of the condition, treatment, support. I cannot diagnose but only give my personal expertise, and refer you to others who can help. I am in touch with doctors, therapists, and professionals on a regular basis. I can help with disability issues pertaining to lymphedema or cancer.
Experience
13 year cancer survivor, Lymphland Support group owner, Owner of Lymphland.com website, writer for Butterfly Gazette, forums coordinator for ELymphNotes online lymphedema magazine, patient and advocate for 10 years, Yahoo answers advanced level answerer.
Organizations
Lymphland Support Group Owner, Lymphland.com website owner, National Lymphedema Network member, American Society of Lymphology member, ELymphNotes forums coordinator and writer, member of many online support groups. Rainbow Bridge Pet Loss Grief Counselor, former bank loan rep, pharmacy ass't
Education/Credentials
college graduate, volunteer in pet loss grief counselling.
| | |
| |
You are here: Experts > Health/Fitness > Rare/Orphan Diseases > Rare Diseases > generalized lipodystrophy
Expert: Tina
Date: 5/15/2008
Subject: generalized lipodystrophy
Question
Hi Tina,
My brother suffers from generalized lipodystrophy since childhood. Since it is a rare disorder I dont know whom should I ask for help. I dont even know which department of doctors should I get in touch with. Can you please help me out.
Can I get some help online? I mean are there any online support groups whom I can get in touch with ?
I would be thankful for your time and effort
regards
rahul
Answer
Hi Rahul, Tell me a little more about his health, what other problems and conditions does he have? What tests has he had done?
There is not alot of treatment options other than to try to exercise, have a good diet, and a few others depending on the diagnosis and health (meaning what other health issues he has). Surgery is usually a last type of option.
Basically he should be seeing, nephrologist, endocrinologist, or rheumatologist. There are alot of metabolic changes in lipodystrophy that need to be managed by the doctors in these fields and they would be the most valuable to have on his medical team.
Some other terms for the condition are: Barraquer-Simons syndrome, Barraquer disease, Simons disease, cephalothoracic lipodystrophy, and acquired partial lipodystrophy.
Some conditions that go hand in hand with lipodystrophe are: systemic lupus erythematosus, dermatomyositis, hypothyroidism, pernicious anemia, celiac disease, dermatitis herpetiformis, rheumatoid arthritis, RA, temporal arteritis, leukocytoclastic vasculitis, and autoimmune diseases.
Many times HIV and AIDS patients experience lipodystrophy due to the disease and treatments.
CLIMB (Children Living with Inherited Metabolic Diseases)
Climb Building
176 Nantwich Road
Crewe, Intl CW2 6BG
United Kingdom
Tel: +44 870 7700 325
Fax: +44 870 7700 327
Email: info@climb.org.uk
Internet: http://www.CLIMB.org.uk
is a group in the UK that helps people living with metabolic diseases.
http://health.groups.yahoo.com/group/PozHealth/ this group deals with it but it's more of an aids/hiv type group and I'm not sure if you would want to join it, since it's not specifically all on your brother's condition.
http://www.thewellproject.org/en_US/Diseases_and_Conditions/Treatment_Related_Co... this discussion board seems to be all women. But it would on topic.
It might be that you'll want to start a support group. I'm sure there are others out there that wish there were more options to discuss problems, treatment, and just talk to others going through tht same condition. If that be the case and you want to start one, I would suggest yahoo groups as you can customize the group to your liking and have files and links inside the group itself.
I hope this helps. In the meantime if you'd like to join my support group for Lymphedema, feel free to do so and we'll help you as much as we can. We do deal with lipedema which is excess fat along with lymphedema. This is my group: http://health.groups.yahoo.com/group/lymphland/
We do have doctors, nurses, physical therapists, etc in the group to help as well.
Blessings, Tina
Add to this Answer
Ask a Question
|
|
