CLIK HERE TO DOWNLOAD THE “PATIENT VIEWS AND PERSPECTIVES” COMPILATION FROM PITUITARY WORLD NEWS.
From Jorge D Faccinetti – co-founder Pituitary World News – Rare diseases, particularly those that come from the pituitary, are complicated and difficult to diagnose. We know that. As patients we hear it all the time. “Well – they tell us – the changes they produce are gradual difficult to notice, many of the symptoms are also the symptoms in many other more common conditions, modern medicine doesn’t allow for a physician to spend enough time with each patient, we don’t see enough of these conditions in a typical practice, physicians can go a lifetime without coming across a case of pituitary disease”, and on, and on, and on.
To further make my point I’ll briefly share another story. I was involved in a case recently where a person with obvious physical signs of acromegaly was told he did not have a tumor after his MRI was reviewed. His endocrinologist and neurosurgeon team had suggested waiting, then eventually use medication to normalize his Igf-1. His primary care doc was convinced he had acromegaly based on the experience he had gained through my case, so he suggested I meet with him. After we chatted and he consulted his primary care doctor again, he made an appointment at a pituitary center of excellence where experts immediately recognized a pituitary adenoma hidden behind an unusual bony structure in the sella turcica. This patient had successful surgery, the tumor was removed in its entirety and now he is cured.
If that doesn’t fry your bones I don’t know what does! But I guess, so I’m told by almost everyone who has been affected by one of these diseases, this happens very often. If you don’t believe me just browse our publication and our Facebook page to see the many comments and stories from our community. They are all very similar. Patients keep jumping from doctor to doctor, sometimes for decades, until one happens to have some experience with pituitary disease and bingo, a correct diagnosis!
A day does not go by where we don’t think about these issues. Boy, if we could just diagnose more people early. If we could just get doctors to put pituitary disease on their list of possibilities as they see patients with relevant symptoms. If we could just get health care providers of all flavors and sizes to recognize the signs. If we could just get patients to be more aware of these diseases and perhaps focus the physician. And maybe all they have to ask is “Doc do you think what I have might be a pituitary condition?”
After a year and a half from launching Pituitary World News we’ve gained much insight. And that insight has enabled us to formulate several strategies to achieve our objective – Help diagnose more people properly and early.
Defining the problem is the easy part. The big question is how do we accomplish it. This is a question we ask of everyone. From business leaders to physicians, to students, to teachers, you name it, when we have the opportunity to learn and get insight, we ask it.
That is why we also asked you for your perspective as a patient and advocate.
About a month ago we published a survey in Pituitary World News in which we asked very simply:
What do you think could be done to help ensure primary care physicians and other frontline healthcare professionals put pituitary disease on their list of possibilities?
The survey was published on the Pituitary World News’ website and will remain available if you wish to provide your thoughts.
Let me first say we received a ton of comments. So we want to thank all who participated for the excellent pointed, thoughtful and relevant answers. Because we received so many comments we selected those that best represented the feelings and experiences expressed by all respondents for this initial compilation. Second, we think these comments and stories will be of great help to decision makers when they consider solutions to the problem at hand. We will make sure you are heard and ensure the patient’s perspective is always taken into consideration. Pituitary World News will always give you a vehicle to voice your ideas and thoughts.
Thank you for getting involved!
CLIK HERE TO DOWNLOAD THE “PATIENT VIEWS AND PERSPECTIVES” COMPILATION FROM PITUITARY WORLD NEWS.
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I am not a patient but a mental health professional but can strongly identify with Jorge’s posting due to the number of pituitary patients and their family members I’ve met/talked with who’ve reported these exact experiences. When I first became aware of pituitary disorders I was a doubter and for a long time remained in disbelief in the prevalence of such issues. I was even more shocked to hear so many stories about physician after physician after physician (not to mention psychologists, psychiatrists, marriage and family therapists etc.) who not only didn’t recognize symptoms but who refused to be curious and learn! I have personally dealt with doctors and fellow mental health professionals who look at me like I’m “crazy” for even having an interest in those who deal with such things!
Thank you Linda!
Great story about this man with acromegaly! In my small town there was a 39 year old man sitting in Sunday School classroom. The teacher was a cardiologist. He noticed some oddities about the 39 year old, and said please see an endocrinologist. He had acromegaly. I myself insisted he see my neurosurgeon Prof. Bruce Mickey. I had Cushing’s prior to this man. He had surgery and is now well several years. I am finding the doctors I see, such as Dermatologist, plastic surgeon’s, surgeons, they all know about Cushing’s disease now. I am surprised because in the 90’s and early 2000’s I went undiagnosed by 8 doctors.
It took 14 years for molly tobe diagnosed. She remains very unwell because of this ?
http://www.mollysmiracle.co.uk/430203570