Hi every one. I was hospitalized twice this year before the Doctors figured out what was wrong with me. I was just told that my adrenal gland wasn’t producing cortisol. I was placed on 5 mg of prednisone. I saw an Endocronologist who had me come in for labs a couple of times. Then I had to get an MRI of my pituitary gland and they found it was smaller than normal pituatary volume. They increase my levothyroxin to 75 mg. With these two meds I found I was turning into a mean depressed crying all the time mess. My levothyroxin was change to 1 75 mgs one day and 1/2 the dose the next. I am still experiencing crying spells anxiety and depression. I started doing my own research as not much has been explained to me anything about Addison’s disease or Hypopituatary. I did ask my PCP for an anti depression and anti anxiety medication but hesitate to take it. However I am under a lot of stress caring for my disabled 70 year old husband by myself. Three hospital stays for him started to wear me out. But I believe in God and just ask him for the strength to continue to care for him and to not neglect my own new illness along with the plethora of illnesses that I have. I have also gained 45 pounds and can’t seem to lose despite my decrease in eating. Hopefully I will find more information on this page to guide me.
Went looking for Addison's Support Group for my son in 2017. None in my area. Connected with a NADF Group in Houston and began the journey to founding our Coastal Bend Adrenal Support Group here in Corpus Christi. NADF is a WEALTH of information and a terrific network for those who need it! I refer so many to their website!!! https://www.nadf.us/
I can't say enough about this organization. In the scariest time of my life they were there to make me realize I wasn't alone with the scary diagnosis of adrenal insufficiency better known as Addison's Disease. They provided reading material to educate me (much more than my endocrinogist had) and never asked for any money. I feel they restored my faith in human kindness and likely saved my life and sanity.
When my grandson was diagnosed with Addison’s, Primary Adrenal Insufficiency, we found the NADF online while searching for a support group, in no time at all we had information on Addison’s, we had info on a support group and could finally breathe and start to figure it all out! I became a support group leader within a year. NADF has helped so many people with AI. They not only support people with AI and their families, they are very supportive of their volunteers!
They are a great resource for Adrenal Insufficiency patients as well as for their families. Thank you for existing!
As a member of NADF, I have been able to be informed about Addison’s disease, current research programs related to Adrenal diseases, a huge support network and a monthly newsletter. I am grateful to be a part of this nonprofit and their work has helped me to help others.
I found NADF months after my adrenal insufficiency diagnosis and it was life-changing. Finding myself with a rare disease was extremely isolating and frightening, and suddenly I found a tremendous amount of medical information with direction from an endocrinologist with expertise in this area. I also found support from my local NADF support group, and later became a support group leader for my local community. NADF is a small but very special organization of people who care deeply and are finding ways to reach others with adrenal diseases, conduct research and help others improve the quality of their lives. Most importantly, they are building awareness in the medical community in order to save the lives of undiagnosed patients who ultimately pass away from the condition.
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I have been a member of NADF (National Adrenal Diseases Foundation) since I was diagnosed about 12 years ago and the connection changed my life. I felt lost and alone suddenly finding myself with a rare disease that my friends and family had never heard of. I was desperate to obtain as much information as possible, and found NADF. Immediately, they sent me a packet of information and connected me to my local support group.
Now, years later I am 'paying it forward' as I now actively support NADF. The foundation provides excellent resources to patients of adrenal diseases, always looking to forward to best ways to connect in our communities.
NADF supplies critical information, not found elsewhere, to people with adrenal diseases. in addition, they are working with EMTs and hospitals to provide tools and education on these rare diseases. They also provide support groups throughout the nation.
Without the NADF and its volunteers I'm not sure where I'd be. I've gotten valuable information that I was able to discuss with my doctor that made my every day life better.
The NADF is a support system for all. The NADF gives their volunteers the tools to help those looking for information whether they be new to adrenal disease, had it for some time, suspecting adrenal disease and the family/support of each of these.
The NADF is a great support system for both the person with adrenal disease and their support system.
I am a Volunteer and Support Group Leader for the NADF. Prior to becoming a volunteer, I turned to their website for guidance when I was diagnosed. I cannot count how many times the information they have made available has helped save my life. I made an "Emergency Binder" full of printouts from their website. I take this to doctor appointments and hospital visits. It has been very beneficial in the Emergency Room where most have never really heard of or studied adrenal issues other than the short amount of time it was covered in medical school. I learned quickly that not only do I need to help educate my family and friends, my own physicians and I were learning together about the disease. There is always something new to learn and no two patients are exactly alike. Once I felt I had a good understanding myself, I asked the NADF how I could help and advocate for them and adrenal diseases awareness. They have been great at giving me support from the very beginning and now as a volunteer, to continue to educate me so that we can try to help and support others as well. I now hold quarterly support meetings in my state.
I have both been served by this non profit and have volunteered for NADF. As someone with Addison's Disease, which is a rare illness, they have helped me so much. They provided all the information and answers I could possibly need in a timely manner. It was my pleasure to volunteer for them and only stopped because of family illness. They treat everyone with the utmost respect and confidentiality, and go above and beyond to make sure they give them the most accurate and useful information on the disease, tools and referral information. Their doctor referral database has been so helpful to so many people!
Helpful and courageous folks willing to share there resources of knowledge and allow for free sharing within private FB support groups for going deeper into the realities of our condition. Receiving support and encouragement and at times warning and rebukes. A true community online has formed as an off shoot, humbling experiences
NADF has provided a valuable resource with information for adrenal disease patients. Their information has saved lives, including mine, by providing information, research, and resources for patients to find a path to disgnosis and treatment. If their information hadn't been available, I may not be alive. The NADF works hard to communicate accurate and current medical research to patients and doctors to provide a continuous support system, and maintains support groups nationwide so none of us with "rare" adrenal diseases feel alone.
their publications incredibly help AI people as often, they are left without being given any useful information re how to manage AI after their diagnosis
NADF does a tireless job of educating the medical community of a disease that is classified as "rare" when it is increasingly becoming more common. I grateful for their support locally and Nationally. They do a great job!
NADF sends a monthly, informative, email to members. When I was diagnosed with adrenal deficiency 30 years ago, my doctor suggested I receive their newsletter. I have learned many things through NADF that past doctors never discussed with me. This organization has been extremely valuable to me.
There are so few good resources for Addison's Disease but this group is invaluable. Addison's is considered rare so patients are dying because their disease is not recognized and diagnosed. This group is spearheading the push to educate the medical industry and public about Addison's. It keeps the sufferers and families up to date on any research or changes in techniques in the treatment of Addison's. Again,This group is invaluable
A few years ago a family member was diagnosed with Addison’s disease, rare diseases of adrenal glands caused by autoimmunity. This chronic and life threatening disease has to be properly treated at all times, special precautions have to be taken during any other medical problems or emergencies. NADF gave me much needed emotional support and information which was presented from a point of view of a patient. Since all material provided by NADF is written or verified by a Medical Advisor I know I can trust it. I was so thankful I found NADF and decided to volunteer and help this small yet very productive organization to continue its patient advocacy work. Thank you NADF and all your volunteers for the amazing work you are doing!
NADF gives us tools and information that save lives. For the first time in my life, I was able to meet others with my disease (Isolated Central Adrenal Insufficiency), and to compare notes with them. We are even planning a research project together. Hopefully, our study will benefit many others with our disease.
NADF has given to us without any profit motive what so ever. After a bad experience I had with a different pituitary disease organization/network, I am relieved to find people I can trust.
I learned I have a rare illness called Adrenal Insufficiency. NADF has been amazing taking my calls and sending me information. I was so impressed I joined them and became a support group leader for NADF in Kansas City!
They are so supportive. Along with all the vital information they provide, they also have local support groups run by volunteers. NADF is a wonderful organization!
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I called NADF looking for a support group. While they didn't have one in my area, I immediately took on the role of Support Group Leader in my area. NADF sends out life-saving information. I am so much more knowledgeable about my disease since joining NADF, and I'm able to help others and support others. The Executive Director and the President of NADF are the most caring, compassionate, and trustworthy people you'll ever meet.
Review from Guidestar
After having Addison's Disease for 3 years, I decided I needed some support. I contacted NADF, and I ended up starting a New England-based support group for people with Addison's Disease. It was the first time I met other people with Addison's. Everyone is so helpful. I've gotten more common sense advice on taking care of myself than I did through my regular endocrinologist.