Support is the keyword to making the best of rare-disease-life! Long before Noah was diagnosed, I found support groups on Facebook. In these groups I found knowledge about hypoglycemia, treatments, dos-and-dont’s and loving support from people from all over the world, affected by hypoglycemia.
Here is my top 6 Facebook support groups – from me to you 💖
I really don’t know how we would have survived without this support-group.
The founder, Julie Raskin, embraced me in to this group when Noah was only 48-hours-old. He was just admittet to the NICU. Thanks to Julie and her group, I was enlightened about HI and told where to find the right HI-specialist in Denmark.
Eventhough we (my kids and I) are now diagnosed with Idiopathic Ketotic Hypoglycemia, our CHI-family is still our safe-zone of support and knowledge. One of many great things about CHI (Congenital Hyperinsulinism International) is their embrace of all hypoglycemia patients. CHI is also known to be a well-established patient union, who are dedicated to raise fundings to make patient-empowered research.
- Members: 1,300+
My collaboration with my mentor Jacob Petersen from Novo Nordisk came after I panicked about my babies getting a CGM. I thought it was a major surgery. I was terrified! In a danish diabetes support group, Jacob came to my rescue. Calmly, he assured me the CGM was a great thing, with very little risk involved. He told me to make sure our kids was getting the Dexcom CGM.
After Jacob made me relax a bit, I found this great group. The group contained answers to all of my questions about Dexcom, and most importantly: How it worked and how it was attached to my kids – and later on; me.
Feel free to check out the article “What is Hypoglycemia?” written by Jacob, here on Hypomom
To Jacob, if you are reading this: No words can describe what your help and guidance has ment to me throughout the years. Thank you for always being there for me even when i’m being a pain in the rear!
- Members: 11,000+
This group is a great place for all who suspects Ketotic Hypoglycemia. The group is a mix of patients who are already diagnosed with ketotic hypoglycemia, family members, GSD patients and people suspecting hypoglycemia in themselves or a loved one.
Please be aware of the headline on the group-name, in the word “hypoglycemia”. At first I wrote about this being a misspelling. Luckily, one of my observant readers made me aware of the fact that the “a” in hypoglycamia was infact NOT a misspelling! It is simply just the way “hypoglycemia” is spelled in the UK. Thank you so much for educating me on this.
- Members: 700+
A public forum with a variety of patients from all over the world. The group is a safe-zone of knowledge about hypoglycemia in all its forms and got members from a variety of patient-groups. Many of them, living with a rare disease. This group also includes members who are not diagnosed, but who feel the symptoms of hypoglycemia. Make sure to always talk to a doctor, if you suspects hypoglycemia in you or a loved one!
- Members: 800+
When you are going through the “g-tube or not g-tube”-phase, you sometimes needs to make a list of the pro’s and con’s. In this big support group, you will see every possible aspect of having a feeding tube. It is sometimes hardcore stuff in this group, but it will prepare you for the best and the worst in life with our lovely tubies.
This group is also a great place to seek advice, if you are uncertain about anything about infections or equipment.
- Members: 4,200+
A part of hypoglycemia patients ends up with a GSD diagnose – either confirmed by genetic testing or diagnosed based on clinical symptoms. This group is a mecca of knowledge about all the GSD variants. The group embraces both diagnosed GSD patients, not diagnosed hypoglycemia patients and patients awaiting diagnose.
If you need to get a review of the specific types of GSD, feel free to ask in the group where patients and GSD parents is ready to pour out of their life knowledge with the rare disease.
- Members: 3,200+