As a person who suffered from unexplained, resistant high blood pressure for over 50 years, and who also worked in public health, I can personally attest to the importance of the mission of the Primary Aldosteronism Foundation. Thank you to all the members of the Foundation, for your hard work to support patients, clinicians, public health officials and all interested parties to expand research and to help develop broad educational/information, policy, treatment and funding initiatives related to Primary Aldosteronism. The work of the Foundation helps showcase the importance of timely efforts to cure this disease and its possible life threatening consequences across all levels of every heath care system.
Because of the great information this foundation supplies us, many of us now know exactly what to look for in finding care and sharing information with others. I don't think I would still be here if I hadn't learned so much about the disease, drugs that work, drugs that don't, and the proper procedures for diagnosis and treatment. Thank you for all you do for so many of us~
I was finally diagnosed late in life after many years of treatment resistant hypertension and other symptoms common with this disease. I joined Facebook specifically because I’d heard about the excellent Conn’s/PA support and information group, and it was there I learned about the PA Foundation. I have learned so much about PA from the PA Foundation and the excellent moderators on FB. I so appreciate the Foundation’s advocacy with the drug companies conducting clinical trials for medications to treat PA.
10 years with resistant hypertension frustrated my GP into accusing me of poor diet, excess weight, alcohol high consumption. It was only when my potassium wouldn’t get to normal levels and I saw a different GP that a nephrology referral was made which kick started the long journey to diagnosis and treatment. After google searching low potassium that led me to the Facebook support groups which then led me to the Foundation and its wealth of knowledge. I live in the UK unfortunately not near the centres of excellence so still have no trust in my medical care.
Hats off to Dr. Marianne Leenaerts and the co-founders for bringing this disease to the forefront. I was unaware this disease is so much more widespread than medical experts have been trained to believe. With all of the right facets in place, I hope to continue to learn more about my disease with the organization; as it's a wealth of knowledge on many levels. I am still learning despite being diagnosed over 15 years ago. I continue to evolve as I learn more. Doctors can only do so much and patients now have a wonderful resource!!
This Foundation has gone above and beyond in assisting me to get properly diagnosed and to find the best care possible! I have multiple co-morbidities along with PA, and the Foundation has always made the time to speak with me and help me navigate each comorbidity as it relates to my PA. I honestly don’t know where I would be without Marianne and Mike…and I don’t ever want to find out! I truly believe the help they have given to me…along with the invaluable information on found on their website, has literally not just saved my life… but the lives of countless others! I am very grateful for their tireless efforts and positive energy to raise awareness for PA as well them taking the time to advocate for all of us PA patients on a daily basis. Thank you, PA Foundation for all you do, it never goes unappreciated!
I wish the Primary Aldosteronism Foundation existed when I was experiencing symptoms - when I was diagnosed the only place to find information was a Facebook page but imagine how many people are not on Facebook or don’t find that page- what if the page gets hacked or goes away? The Foundation is doing absolutely crucial, much needed work for PA and I am so grateful. I am luckily cured, but lived with excessive aldosterone in my system wreaking havoc for 15 years. I know because of the foundation, others like me, will not have to wait 15 years and will not have to do the amount of leg work I did to get proper care since so few doctors truly understand how to properly diagnose and treat PA. For new patients, they have amazing resources for you. For doctors, this will help them in properly diagnosing and treating this condition. Thank you Primary Aldosteronism Foundation!
this is an amazing foundation. it is a young organization that has been formed and managed with very limited resources, but with sharp minds who have a personal and vested interest in bringing all of the systems who work with this disease together (medicine, academics, research, etc) so that they can find real answers to the unanswered questions, to notify the public so that they are more aware of the symptoms and how to & where to find help for their condition, and to discover more reliable and viable medical advances that will lead to cures or, at the very least, to less complicated side effects due to the current available medications/treatment.
The foundation has proved to be invaluable in my journey to discover, treat, and test for Primary Aldosteronism. The information from the foundation ensured that testing was done correctly, diagnosis valid, treatment accurate. I would not have had my issues resolved without the foundation, I am forever grateful. The foundation advocates on behalf of PA patients to fight for new and better medical treatments that can be provided in the future to make this condition tolerable.
I was recently diagnosed with PA, however have struggled with PA for over 10 years. Similar stories shared amongst people who have the disease are all too familiar with High blood pressure and struggles with low potassium. I had little to no knowledge of the disease. The PA Foundation has helped me better understand the intricacies of the disease. From Aldosterone, renin, cortisol, adrenals, to the where, how, what’s. I am able to understand and find what I’m looking for from the site. I also have the comfort of knowing that I can reach out to the founders and ask questions at any time. The information on the website is also a powerful tool armed with information, especially before I head to a doctor visit. It allows patients such as myself to be able to self advocate and fight for better care. The site also contains a vast data bank of drs and surgeons all qualified and vetted by patients who treat the disease. The Foundation offers me support that no others can compare to. Most importantly I know that I am not alone. Invaluable.
The website of the Primary Aldosteronism Foundation is an encyclopedia of information for anyone who suffers from the condition. The information is far more comprehensive than what most doctors or online articles provide, ensuring that you have access to the most detailed and accurate information available. My experience with the Primary Aldosteronism Foundation has been incredibly supportive and enlightening. From the moment I reached out, I was greeted with empathy and understanding. The foundation's commitment to raising awareness and focus on grassroot level education of healthcare system about primary aldosteronism is invaluable. Their forums and community support have connected me with others facing similar challenges, offering comfort and encouragement. They have an entire directory of specialists and centres of excellence across the globe that one can easily tap into to find the right choice of dcotor for oneself. Thanks to their efforts, I feel more empowered and informed in managing my condition. I'm deeply grateful for the work they do and highly recommend the foundation website to anyone affected by primary aldosteronism (or a caregiver).
I am a patient whose life has been completely turned upside down due to primary aldosteronism, and I am extremely lucky that I didn’t begin to have severe symptoms until after the PA Foundation was formed. I cannot imagine having to navigate the complexities of seeking diagnosis and care for this disease without their support. Their website is the only place to find actually useful information about the disease, and the associated support group is an incredible resource as well; I credit both with saving my life. The PA Foundation is doing incredible work to advance patient care, and I look forward to the coming years where the medical community has a better understanding of this horrendous disease thanks to their extraordinary efforts.
Extremely important resource for me as PA patient: their information on the website as well as their facebook group where many patients from all over the world can share experiences and can get very valuable advice from the very knowledgeable moderators. I’m sort of lucky that I could be ‘cured’ by adrenalectomy two years ago, but still I follow the facebook group and learn a lot - amongst others that the disease may return in the other adrenal gland with higher chance than one would hope for, but also hopeful news about upcoming PA drugs. It is amazing how this group serves a world-wide community where people can even write in their own language and get helped. PA is a nasty disease with a difficult and time-consuming diagnostic process that even doctors are often not well aware of. This foundation powers patients and is live changing.
Prof RC Jansen, The Netherlands
This foundation helped me self-diagnose an issue that Drs had overlooked for around 30 years. I then pushed for testing to get an official diagnosis. Considering this is a progressive disease I feel the proper diagnosis has helped save my organs from additional damage, or perhaps saved my life.
The PA Foundation is literally helping thousands of people find out more about their disease. The information provided has helped me feel validated and understand my symptoms. I am so grateful to have access to this valuable resource.
My foundation has been instrumental in my education of Conn syndrome and having the right care to extend my life!!! I believe that I have extended my life by 10 plus years just by getting the education of the disease! I also appreciate them fighting for more advanced medications!!
I learned of the Primary Aldosteronism Foundation through a support group when diagnosed with the illness. Their knowledge and advocacy for patients of PA is excellent. Very impressed!
The PA Foundation website is the best online resource for primary aldosteronism and it is working hard with clinicians and the pharma industry to improve the prospects for PA patients.
The information provided by this organization is invaluable to patients trying to navigate the health system, and providers who may not be aware or fully informed about Primary Aldosteronism. Unfortunately, with so much misinformation out there, it's important for us as the general public to be informed about our diagnosis and understand the risks of being treated as someone without the disease. I am not sure what kind of outcome we would have without this organization, and the information it provides.
I have been diagnosed with PA and through this site I have found the information smI have needed to make informed decisions and be able to ask questions around my care.
It has been an invaluable source of information. Thank you.
Many people struggle to find medical providers who know how to test and treat primary aldosteronism. This organization and website has been a godsend. I feel educated enough now to be able to confidently advocate for myself in my treatment, largely due to this organization. They cover all the bases, from; proper protocol for testing for the disorder; information about Clinical Trials; and news about medications currently being tested. They also provide a worldwide database for those seeking treatment centers or providers who are experienced with the disease. Eternally grateful for this group.