Hi AJ, thankyou for sharing your story. It's amazing that you are so positive and have your life back. I live in England, was diagnosed in June 2022, with no symptoms prior, apart from a deep suntan! I had donated blood that day which sent me into an adrenal crisis. I went to the hospital as I knew something was horribly wrong and am so lucky that the A&E dept saved my life, despite not knowing what was wrong. I too am doing well and listen to my body. I am a reflexologist and continue to have a treatment every three weeks which I know keeps me well. I'd encourage Addisonians to give it a try! All the best to you. Well done.
Thank you for sharing AJ. I’m so glad your diagnosis was quick for you and that you have a great support system. You seem to have a very positive attitude and that will take you far. Knowing our bodies and utilizing what we are taught is so important. Groups like the NADF are so important when we’re first diagnosed especially but even more so as research and information continues to improve for us. I am the Ohio Support Group Leader for the NADF and would love if you could maybe come speak at one of our meetings sometime. I wish you all the best! Susie
Nice job AJ . I was diagnosed with Addisons June 2001 It's been 23 years. I lived in Iowa humid and now Phoenix . I hear people struggling with Addison . I want to let you know my I occupation is outside 118 TEMPS. I have never ever struggled 1 day with my disease, I am 58 years old, And everyday since I took my first steroid medication it's been 100 % fine. You will be fine. Make sure your taking Vitamin D and calcium supplements
Hi AJ - I was diagnosed with type one diabetes in 2007 at the same hospital in Pittsburgh. I'm now in process to diagnose Addison's - part of me hoping it's not it and part of me hoping I can medication to feel like myself again. Thanks for sharing your story!
I enjoyed listening to your story A.J. I too, have Addison’s Disease. I was diagnosed fairly quickly in 2000 after exhibiting several symptoms. I was healthy and a good weight and active but then….. I was a nurse working at a hospital and so did my boyfriend. He would have to drop me off at the door because I was very cold intolerant. If I tried to walk in, I would vomit and become very ill. I had a low blood pressure and passed out a few times especially if I was low on sodium. I felt my life had turned upside down. My medical doctor picked up on it right away. I didn’t believe and went to three doctors to be tested again and again. I stayed ill a lot but eventually learned how to take care of myself but then they said I developed asthma. It was terrible and I was in and out of the hospital. That happened after I gained a lot of weight and had to use a c-pap. Long story short, I got my life back and it took several years but I feel very good now. My weight is much better and I’m active. I am now 67 years old and feel better than all of those years I suffered being blown up on extra steroids for this and that. My maintenance dose is Hydrocortisone 20mg daily. I do still crave salt though. Take care and I hope you do well but just remember to adjust your dose for surgeries etc and if you ever experience trauma.
Thank you for sharing AJ! I’m almost a year in and doing great! Having Addison’s has changed me for the better. It has pushed me to be better and go for things that I normally never would have. I appreciate every day of my life and I’m so thankful that our condition is manageable. Keep doing great things!
Hey, man! Thanks for you sharing. I've been diagnosed with Addison 2 days ago, and got to be diagnosed in the hospital where I got being near to death, and this me just being 21 years old. I know that you should have a lot of courage to go on internet and tell all the people about something that feels private. I really want for you to know that this means a lot for other people, same as for me and the idea that God makes all the things right and for a reason, it's absolutely true and should never be forgot! AJ, thanks again for encouraging us with your story! P.S. I'm so sorry if I made any grammatical mistakes, I am from other country and now living in US. Trying my best at this :)
You are so very young to diagnosed with Addisons. I’m old, 67🙂 and was diagnosed in 2000. I’ve never really gotten on TH-cam to check into Addison’s and today this just popped up in my email. I was happy to hear A.J. put his story out there. I hope you do well. Just take care of yourself and know you’re limitations.
Thank you for sharing AJ. I am a mom to a 22 year old boy, Zack, who was also diagnosed with Addisons at 18 years old. I can't wait to show him this video when he gets home from work. Your story is very similar to Zack. Great job with the video. Your mom must be so proud. Thank you again.
Thank you so so much! I’m sure zach is doing great things as well. Feel free to have him reach out if he would like, I always love hearing new stories and learning from others!
Mom to a 21 yr old addy daughter, diagnosed when she was 18. Thank you for sharing your story! Can't wait to have her watch when she's home from college!!!
Thank you. I'm 3 years in and very ill. The hydrocortisone has given me osteoporosis, severe and I've lost the ability to walk due to compression fracture that collapsed and wedged my vertebrae. Now my hip is fractured. I appreciate your story. It gives me hope. ❤
I'm sorry to hear you dealing with all of that. Do you have a current Endocrinologist you are working with who is offering you the care you need? I'd love to direct you to the NADF website and invite you to reach out to nadfsupport@nadf.us if you have any questions or would like help connecting with a support group in your area: www.nadf.us/
Thanks for sharing your story. 🙏🏻 When you were diagnosed, did you go through a ACTH/Synacthen test? What medication/hormones are you taking besides hydrocortisone and what dosages? You mentioned injectables, is oral HC not sufficient? Thanks. 🙏🏻
Thanks for sharing details about your journey: pre-Dx vs post-Dx, your AD symptoms, and Dx process. The info re atypical ‘salt cravings’ was especially helpful!
Similar story to mine. I was very fit serving in the US Marines. I used to be one the of the fittest in my platoon and then I just started noticing I couldn’t keep up. I was getting dizzy and couldn’t eat. I was separated from the Marines which kind of ruined my life for me because it was my dream. Have had addisons disease for 13 years and honestly I feel great. No noticeable symptoms. Some days I’m more tired than other but that’s about it.
While we are sorry to hear you have to leave the Marines, we are glad that you are feeling great and honoring your body! Thank you for sharing your story!
AJ, your story gives me hope!! I especially love that you referenced God and how He has helped you through it. My 12 year old daughter was recently diagnosed, and she is doing well, and it makes me so happy that you are doing well too! Your parents must truly be so proud of you!! ❤
There should be no problems with obtaining hydrocortisone, or prednisone in the US . May I know where are you located? Please replay to my email at nadfmail@nadf.us
@@nadf_adrenal Hello Thank You for Responding Am grateful this means alot to me and the family I'll do as. You've said sending the Email and waiting for response 🙏🏽
@@nadf_adrenal Please I Sent a Mail according to your request and have not gotten a reply yet. But I'll send again and again till I get your response Thank You 🙏🏽
Thank you for sharing AJ 🙏❤. 2 Questions A) did you have to take a break from basketball post-diagnosis or did you just go right back to it ? B) you said you're playing girls basketball and I'm very confused. Can you please explain? #NewHere :) -mandy
I created nonprofit organization (ALD Hope) for raising the awareness of adrenal insufficiency and X-linked adrenoleukodystrophy (ALD), as my sons are diagnosed by them. Also, I have TH-cam channel advocating for these diseases.
Thank you for sharing your story, I have two boys (13 & 7 yrs old) having adrenal insufficiency and you gave me hope that they can be as successful in their future life as you. God bless you! I have a question for you, did you know the cause of Addison’s disease? Is it autoimmune or something else?
Hi! Thank you so much I truly appreciate it! We never found my root cause but it was suspected that with a recent mono diagnosis and a lot of stressors from school/life is what led to it! Your boys are stronger than they know, they will do great things!
@@ajconnor2824 I believe that it is important to know what causes adrenal insufficiency, there are some bloodwork need to be done for example if it is autoimmune, adrenal antibodies to be checked or very long chain of fatty acids for a genetic disorder and this is my sons case. I highly recommend checking the cause so please follow up with your endocrinologist and insist to know the reason. And keep it up for advocating, this will benefit lots of patients.
My son's endo did a test that was sent out and took two weeks to confirm that his Addisons Disease is genetic. I then had my younger son tested but he did not have the gene. I was told that because my one son has it, my other son is more likely then someone who's brother did not have it but it didn't mean that he did and he doesn't!
I suspect that I too will be soon diagnosed with Addison's. You said that you have to inject. I thought that it was available in pill form. Am I getting wrong information?
@@user-te1kf3dk8b I thank you very much for that information. It takes a bit of my concern about it out of the equation. It is much appreciated. You have a wonderful day.
@peterdobson3435 you can keep as an emergency stop plug . Or just go to nearest a&e . But only in an adrenal crisis . You'll soon calm down into the illness and be more confident . I'm very happy 8 months later . And healthy
@@user-te1kf3dk8b Again, thank you for the information and encouragement. It is greatly appreciated. I am grateful that one can manage this disease at least. It just goes to show that no matter how careful you are in life when it comes to your health, you can never prevent every medical issue and this is one such rare case.
Thanks for sharing your story! It resonates with the salinity and cathartic authenticity our shared journey shares. Continued success. 🧩A Journey of Lost Dreams, Seattle's Grunge, and the (🧩⤵️) Power of Henry Fool th-cam.com/video/0P9QMF_5EGI/w-d-xo.html
Hi AJ, thankyou for sharing your story. It's amazing that you are so positive and have your life back.
I live in England, was diagnosed in June 2022, with no symptoms prior, apart from a deep suntan!
I had donated blood that day which sent me into an adrenal crisis. I went to the hospital as I knew something was horribly wrong and am so lucky that the A&E dept saved my life, despite not knowing what was wrong.
I too am doing well and listen to my body. I am a reflexologist and continue to have a treatment every three weeks which I know keeps me well. I'd encourage Addisonians to give it a try!
All the best to you. Well done.
DR OBALAR ON YT CURED MY HPV VIRUS COMPLETELY ❤
Thank you for sharing AJ. I’m so glad your diagnosis was quick for you and that you have a great support system. You seem to have a very positive attitude and that will take you far. Knowing our bodies and utilizing what we are taught is so important. Groups like the NADF are so important when we’re first diagnosed especially but even more so as research and information continues to improve for us. I am the Ohio Support Group Leader for the NADF and would love if you could maybe come speak at one of our meetings sometime. I wish you all the best! Susie
Nice job AJ . I was diagnosed with Addisons June 2001 It's been 23 years. I lived in Iowa humid and now Phoenix . I hear people struggling with Addison . I want to let you know my I occupation is outside 118 TEMPS. I have never ever struggled 1 day with my disease, I am 58 years old, And everyday since I took my first steroid medication it's been 100 % fine. You will be fine. Make sure your taking Vitamin D and calcium supplements
Thank you❣️ I'm two years into this and I'm struggling. My journey has been a real rough one. Thank you for sharing your story.
Thank you so so much! I’m so sorry to hear that though. If you ever need someone to reach out to do I am more than willing!
Sending you much love and courage @chickensfor days9149. May your life get better and better as time goes on.
I hope you read my comment above. Nancy Laster
❤🧬🧬you are brave smart intelligent showing your love awareness boss man well said love from uk
Hi AJ - I was diagnosed with type one diabetes in 2007 at the same hospital in Pittsburgh. I'm now in process to diagnose Addison's - part of me hoping it's not it and part of me hoping I can medication to feel like myself again. Thanks for sharing your story!
I enjoyed listening to your story A.J. I too, have Addison’s Disease. I was diagnosed fairly quickly in 2000 after exhibiting several symptoms. I was healthy and a good weight and active but then….. I was a nurse working at a hospital and so did my boyfriend. He would have to drop me off at the door because I was very cold intolerant. If I tried to walk in, I would vomit and become very ill. I had a low blood pressure and passed out a few times especially if I was low on sodium. I felt my life had turned upside down. My medical doctor picked up on it right away. I didn’t believe and went to three doctors to be tested again and again. I stayed ill a lot but eventually learned how to take care of myself but then they said I developed asthma. It was terrible and I was in and out of the hospital. That happened after I gained a lot of weight and had to use a c-pap. Long story short, I got my life back and it took several years but I feel very good now. My weight is much better and I’m active. I am now 67 years old and feel better than all of those years I suffered being blown up on extra steroids for this and that. My maintenance dose is Hydrocortisone 20mg daily. I do still crave salt though. Take care and I hope you do well but just remember to adjust your dose for surgeries etc and if you ever experience trauma.
DR OBALAR ON YT CURED MY HPV VIRUS COMPLETELY ❤
Thanks for sharing, buddy. I’m SAI from Youngstown. Keep up the good work, my friend. 🫶🏼
Thank you for sharing AJ! I’m almost a year in and doing great! Having Addison’s has changed me for the better. It has pushed me to be better and go for things that I normally never would have. I appreciate every day of my life and I’m so thankful that our condition is manageable. Keep doing great things!
Thank you so much Alicia! It definitely has changed me for the better as well. I’m so happy to hear that someone has had that experience as well!
Hey, man! Thanks for you sharing. I've been diagnosed with Addison 2 days ago, and got to be diagnosed in the hospital where I got being near to death, and this me just being 21 years old. I know that you should have a lot of courage to go on internet and tell all the people about something that feels private. I really want for you to know that this means a lot for other people, same as for me and the idea that God makes all the things right and for a reason, it's absolutely true and should never be forgot! AJ, thanks again for encouraging us with your story!
P.S. I'm so sorry if I made any grammatical mistakes, I am from other country and now living in US. Trying my best at this :)
You are so very young to diagnosed with Addisons. I’m old, 67🙂 and was diagnosed in 2000. I’ve never really gotten on TH-cam to check into Addison’s and today this just popped up in my email. I was happy to hear A.J. put his story out there. I hope you do well. Just take care of yourself and know you’re limitations.
Thank you for sharing AJ. I am a mom to a 22 year old boy, Zack, who was also diagnosed with Addisons at 18 years old. I can't wait to show him this video when he gets home from work. Your story is very similar to Zack. Great job with the video. Your mom must be so proud. Thank you again.
Thank you so so much! I’m sure zach is doing great things as well. Feel free to have him reach out if he would like, I always love hearing new stories and learning from others!
@@ajconnor2824 Zack is always willing to talk too. If anyone ever needs to ask questions he can answer he is willing to chat too!
Mom to a 21 yr old addy daughter, diagnosed when she was 18. Thank you for sharing your story! Can't wait to have her watch when she's home from college!!!
Thank you so much I truly appreciate it! This is the first time I’ve really shared my story so if she needs any advice at all feel free to reach out!
Great story . ❤ hope I'm the same as you in 8 years . I'm just diagnosed 8 months . But doing great
Thank you. I'm 3 years in and very ill. The hydrocortisone has given me osteoporosis, severe and I've lost the ability to walk due to compression fracture that collapsed and wedged my vertebrae. Now my hip is fractured. I appreciate your story. It gives me hope. ❤
I'm sorry to hear you dealing with all of that. Do you have a current Endocrinologist you are working with who is offering you the care you need? I'd love to direct you to the NADF website and invite you to reach out to nadfsupport@nadf.us if you have any questions or would like help connecting with a support group in your area: www.nadf.us/
Thanks for sharing your story. 🙏🏻
When you were diagnosed, did you go through a ACTH/Synacthen test?
What medication/hormones are you taking besides hydrocortisone and what dosages? You mentioned injectables, is oral HC not sufficient? Thanks. 🙏🏻
Thanks for sharing details about your journey: pre-Dx vs post-Dx, your AD symptoms, and Dx process. The info re atypical ‘salt cravings’ was especially helpful!
Similar story to mine. I was very fit serving in the US Marines. I used to be one the of the fittest in my platoon and then I just started noticing I couldn’t keep up. I was getting dizzy and couldn’t eat. I was separated from the Marines which kind of ruined my life for me because it was my dream. Have had addisons disease for 13 years and honestly I feel great. No noticeable symptoms. Some days I’m more tired than other but that’s about it.
While we are sorry to hear you have to leave the Marines, we are glad that you are feeling great and honoring your body! Thank you for sharing your story!
What is your current dosage of meds
@@faizahzakaria8372 If you would like, you can reach out to nadfsupport@nadf.us to be connect with AJ, the NADF Pennsylvania Support Group Leader.
Such a great story
May I ask you a question my dear
Do you take DHEA supplement too???
AJ, your story gives me hope!! I especially love that you referenced God and how He has helped you through it. My 12 year old daughter was recently diagnosed, and she is doing well, and it makes me so happy that you are doing well too! Your parents must truly be so proud of you!! ❤
My Dad was Diagnosed with Addison case for a while and we're finding it difficult to get the prescribed medications
We need Help!!!❤
There should be no problems with obtaining hydrocortisone, or prednisone in the US . May I know where are you located? Please replay to my email at nadfmail@nadf.us
@@nadf_adrenal Hello Thank You for Responding Am grateful this means alot to me and the family I'll do as. You've said sending the Email and waiting for response 🙏🏽
@@nadf_adrenal Please I sent a mail over three weeks now but I've not gotten a reply but I'll send it again and again till I get your response 🙏🏽
@@nadf_adrenal Please I Sent a Mail according to your request and have not gotten a reply yet. But I'll send again and again till I get your response Thank You 🙏🏽
Thank you for sharing AJ 🙏❤.
2 Questions
A) did you have to take a break from basketball post-diagnosis or did you just go right back to it ?
B) you said you're playing girls basketball and I'm very confused. Can you please explain? #NewHere :)
-mandy
I created nonprofit organization (ALD Hope) for raising the awareness of adrenal insufficiency and X-linked adrenoleukodystrophy (ALD), as my sons are diagnosed by them. Also, I have TH-cam channel advocating for these diseases.
Thank you for sharing your story, I have two boys (13 & 7 yrs old) having adrenal insufficiency and you gave me hope that they can be as successful in their future life as you. God bless you!
I have a question for you, did you know the cause of Addison’s disease? Is it autoimmune or something else?
Hi! Thank you so much I truly appreciate it! We never found my root cause but it was suspected that with a recent mono diagnosis and a lot of stressors from school/life is what led to it! Your boys are stronger than they know, they will do great things!
@@ajconnor2824 I believe that it is important to know what causes adrenal insufficiency, there are some bloodwork need to be done for example if it is autoimmune, adrenal antibodies to be checked or very long chain of fatty acids for a genetic disorder and this is my sons case.
I highly recommend checking the cause so please follow up with your endocrinologist and insist to know the reason.
And keep it up for advocating, this will benefit lots of patients.
My son's endo did a test that was sent out and took two weeks to confirm that his Addisons Disease is genetic. I then had my younger son tested but he did not have the gene. I was told that because my one son has it, my other son is more likely then someone who's brother did not have it but it didn't mean that he did and he doesn't!
I should also say that my son's started to show up after he had the flu.
@@donig7337 Do you know which genetic disorder that your son have?
I've had Addisons disease since I was 14 I am now 68
R u now ok with addison disease
I suspect that I too will be soon diagnosed with Addison's. You said that you have to inject. I thought that it was available in pill form. Am I getting wrong information?
You only have to inject in servere cases . Rarely . Only in adrenal crisis
@@user-te1kf3dk8b I thank you very much for that information. It takes a bit of my concern about it out of the equation. It is much appreciated. You have a wonderful day.
@peterdobson3435 you can keep as an emergency stop plug . Or just go to nearest a&e . But only in an adrenal crisis . You'll soon calm down into the illness and be more confident . I'm very happy 8 months later . And healthy
Make an appointment with your local endocrine nurse . They should give you a talk on things and make you more aware . Also calmed me down alot
@@user-te1kf3dk8b Again, thank you for the information and encouragement. It is greatly appreciated. I am grateful that one can manage this disease at least. It just goes to show that no matter how careful you are in life when it comes to your health, you can never prevent every medical issue and this is one such rare case.
Thanks for sharing your story! It resonates with the salinity and cathartic authenticity our shared journey shares. Continued success. 🧩A Journey of Lost Dreams, Seattle's Grunge, and the (🧩⤵️) Power of Henry Fool
th-cam.com/video/0P9QMF_5EGI/w-d-xo.html
th-cam.com/video/XZ5VGFQZLoY/w-d-xo.htmlfeature=shared
DR OBALAR ON YT CURED MY HPV VIRUS COMPLETELY ❤
Too much talking disease. Get to the point
If you can't say something nice...