I am James Kelly, and I founded SEAFFACS.org to help those with loved ones suffering from the devastating effects of Cushing's Syndrome. Rather that the traditional approach of specializing in a field of study such as endocrinology which is limiting, I chose instead to focus on Cushing's Syndrome as its own field of study. I have studied it through regular contact with thousands of patients that suffer from both endogenous and exogenous forms. I have collected a comprehensive compilation of peer reviewed medical literature that spans many medical specialties and sub specialties that include Psychoneuroendocrinology, Pharmacology, Rheumatology and Cardiology among others. The depth that I have studied this topic with is rivaled only by top publishing researchers because helping the family members of Cushing's Syndrome patients has become a passion of mine. I have been especially moved by patient after patient wanting to be free of their medically prescribed addictions to Prednisone and there being little to no support available to them, or even validating their addiction which is truly no different than any other disease. I have also been moved by a greater understanding of the role of glucocorticoids in relationship to classic substance addictions, and a greater understanding of the epigenetic transmission of addiction through the generations of families via stress, hormones, anatomical changes in cerebral anatomy and the behavior that results. Information can be powerful in the right hands, and I want to make it available so that there might be less suffering and more understanding.
I am a vocal advocate for supporting the patient and their families in dealing with this challenging disease. A major part of this is educating people about Cushing's Syndrome and raising awareness for this condition, so that more pressure is put on the medical field to recognize the addiction that can becaused by the prescription of corticosteroids, and so that those with endogenoue Cushing's Disease are more easily recognized within the medical profession rather than lingering for years undiagnosed as many patients do. I am willing to do this in almost any venue including but not limited to social media, speaking engagements, phone conversations, and face to face discussions. While I understand the effects of Cushing's Syndrome well, I focus on the mental and psychological impact of this endocrinological condition rather than the physical effects.
I do not confirm suspected conditions, but based on my experience and education, will comment on the diagnosis made and possibly suggest other considerations. I will back my opinions up with the appropriate references within the medical literature, and much of what I have to say is going to be difficult for many to hear. I do not sugar coat this condition because lives other than the patient's may be at stake, and sugar coating does them no justice.
Since the majority of the patients with exogenous Cushing's Syndrome are women and a variance in cortisol levels within a marriage is associated with increased intimate partner violence, high conflict divorce, parental alienation and it is well recognized that this environment is not conducive for the well being of the children involved, I am a proponent of setting up a legally binding planned transfer of custody of the children to the non Cushing's Syndrome partner in advance of the deterioration caused by the disease so that if a divorce should become necessary and the non Cushing's Syndrome patient is male, it minimizes the conflict and the psycological damage to the children involved. This should include quantitative measures set by a neurologist that is very familiar with the neurological impairments that are part of Cushing's Syndrome. The children should be helped to understand in an age appropriate manner, that the Cushing's Syndrome patient is sick and it can affect how they think and how they behave, and be helped to seperate the effects of the disease from the person that they know as their parent.