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1st Annual Sweet’s Syndrome Awareness Day (#SSAD2014)
SAVE THE DATE!
The first ever Sweet’s Syndrome Awareness Day is February 26, 2014!
Why February 26?
- It’s 2 days before Rare Disease day, which is February 28 and promoted throughout February.
- It’s the first anniversary of the launch of the site and campaign.
- And, it’s just 2 weeks after the “sweetest” holiday of the year, Valentine’s Day!
If you want to help spread awareness of this rare disease, whether you have it or not, “Sweeties” around the world would appreciate it! “Sweeties” are sweetly shouting on the Internet to raise awareness and education the public and medical community about this not-so-sweet disease. And, use #SSAD2014.
So, get online February 26 to see what it’s all about and to help spread the word near and far!
What you can do to promote awareness
- Add a Twibbon to your Twitter and/or Facebook profile.
- Use #SSAD2014 in your posts on Facebook, Twitter and Google+
- Download, use and/or share the promotional image
- Add a link to this site/page to your e-mail signature, blog, Facebook, Twitter and Google+ pages
- Comment and share posts on this site, the Sweet’s Syndrome Awareness Facebook page and the Sweet’s Syndrome Awareness Google+ page.
Purchase and Wear the Button
Zazzle’s 6″ button can be customized for any of the round buttons.
Funds for this button purchase are not tax deductible and do benefit this site.
Download, use and/or share these promotional images.
Sweet’s Syndrome Awareness Day Flyer – Print-ready file
Facebook cover image with space to accommodate the profile images
Share this image on Instagram or for any site that requires a square image file.
Use on your own site or blog.
Use on your own site or Word Press blog.
Share this image on Facebook, Pinterest, Google+ or anywhere!
Share this image on Facebook, Pinterest, Google+ or anywhere!
Sweet's Syndrome Awareness Campaign 
On Jan 7 , I was confirm that I have sweet syndrome. I have been so sickand no one knew how to treat this. Dr Sean McGee at LPCH knows how. This was a happest day to have someone tell me I can help
It’s wonderful you’ve found help! I hope you start seeing improvements in your symptoms soon.
Please feel free to contact us, join the forums and groups. There are a lot of great, helpful people in the SWeet’s Syndrome UK Facebook group–many of whom are from around the world.
–Rhonda, notsosweets
Is there a like for FB, only saw one for twitter above with the awareness campaign, but one below for FB reply’s. I was diagnosed several years ago and would love to be able to connect with other’s about this, treatments, daily life, etc.
This is the best FB Group: https://www.facebook.com/groups/sweetssyndromeawareness/
It’s technically called “Sweet’s Syndrome UK” but there are more members outside of the UK than those in the UK. It was started by “sweetsfiend” who posts all the wonderful research and advice you see on this site. The members of the group ask a range of questions and provide some great advice–Michelle generally steps in, especially if she’s concerned about “Sweeties” going down a dangerous path with symptoms, meds, and/or at-home treatments.
We both look forward to seeing you in the group(s)!
We also have this forum: http://sweetsyndrome.healthunlocked.com/
It’s also moderated by “sweetsfiend”. She keeps up with it regularly.
Other groups you may find helpful are:
Sweet’s Syndrome friendship and support (open group), https://www.facebook.com/groups/sweetsdisordercare/
Sweet’s Syndrome Support (closed group), https://www.facebook.com/groups/473309086076112/
Sincerely,
Not-So-Sweets
Thank you so much.
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Hi,
My mother Gina was diagnosed many years ago with sweets syndrome and just when she found a doctor to help start some sort of treatment or even just to have someone who actually knows what it is she lost her insurance. She now has to go to our local clinic and is actively looking for a doctor who can help but she does not have hardly any money to pay. She has been getting frequent breakouts and has been very depressed do to that and having no doctor that understands. I would love to find some support for her. Please let me know if anyone knows of support groups because she says she cannot find any. Thank you all so much and I pray you are all healed or find a doctor to help treat this rare condition.
Ashley,
Unfortunately, the only support groups specifically geared towards Sweet’s Syndrome are online. This is because it’s such a rare disease that it’s difficult locating folks within a reasonable distance from one another.
First, let me point you to the new site where you’ll find the list of online support groups.
http://sweetssyndromeawareness.com/patients/
Second, visit the page for healthcare professionals and print the PDFs located under the heading “Diagnostic Aids/Symptomatology” and have your mother take these with her to appointments. These will help her to educate new doctors.
http://sweetssyndromeawareness.com/healthcare-professionals/
It’s possible she may qualify for disability if her symptoms are bad enough. Of course, that requires that she have a knowledgeable doctor.
Here is a link to info for disability: http://sweetssyndromeawareness.com/patients/disability/
Here is a link to see if we’ve listed a doctor in her area with Knowledge of Sweet’s: https://docs.google.com/spreadsheet/ccc?key=0ApFaahRH902DdGtBMnF6NnpDNEZxckdwOGRDNTFvdmc&usp=sharing
Please contact us at info@sweetssyndromeawareness.com if you need further assistance.
http://www.sweetssyndromeawareness.com
Hi my name is Gina, I was diagnosed with sweets syndrome about 9 years ago however my question is in regards to disability when i look at the illnesses that are listed under the Cal conditions I do not see sweets or any other names associated with the illness on this list, does this mean it is a very difficult road to apply for SSI? I just need help regarding this due to the fact that I have had very poor health care in the past four years and no one to really back up my diagnosis other than the first doctor who is a dermatologist that I am going to see on the 18th but that will be an out of pocket expense but I will not be able to see him on an ongoing basis and the longer I have had my sweets the more medical problems I have accumulated I live in California and there are really seem to be not a lot of doctors in my area at all who are aware of this illness please send any advice or help you may have. Thank You Gina
Gina,
It will be time-consuming and possibly hard, but it’s quite possible to get disability for Sweet’s Syndrome.It does mean you will need more documentation.
“Due mostly to the ever increasing volume of Social Security disability claims, denial rates for applications at the initial stage are currently upwards of 60%. In the reconsideration stage, or first level of appeal, that number jumps to more than 80%.”
Continue to appeal if you’re denied–as many times as it takes. One Sweet’s patient reports that keeping a journal/diary of symptoms and photos has helped win in the appeal process. You may use the documents on this site to help you document your disease symptoms.
Symptoms Checklist fillable (or for printing),
Daily Scale Diary (XLS), and the
Patient Journal
http://sweetssyndromeawareness.com/patients/disability/
I’ve posted your comment/question in several of the forums/groups online so others who’ve personally been through the process can provide more detailed information or advice.
Carole wrote: Go ahead and apply for disability. They send you to “their” doctors and a psychologist ( no cost to you). Fill out forms as accurately as you can with any documentation you have. It takes a good while. If, then they do not accept your application find an agency that will help you file. Stay well and good luck.
Helen wrote: I just recently got approved for my disability and have Sweets. I am in Denver, CO however I was approved under fibro and other conditions and because I had an extensive medical history backing up everything that I have been going through. I can say that most disability attorneys do not charge anything until you are approved and receive settlement back pay so you should be able to find someone in your area to help you or at least to be able to talk to. I do know my attorney said that the reason mine was approved in the first appeal/hearing was due to my extensive medical history/doctor records, etc backing everything up including all the suffering with Sweets. Feel free to message me directly not sure if I can be of any help but will be happy to try.