– The thirty-five physicians and medical professionals were discussing a condition so rare, only two of them had ever seen it, and one of those was the specialist speaker, Dr. Tauseef Ahmed Sarguroh, a fellowship-trained nephrologist with Kidney Care Center Olympia Fields.
“It’s really a testament to their commitment to their patients,” said Dr. Eugene Tanquilut, the organizer of the evening’s event. “These medical professionals are spending hours of their evening to learn how to identify a disease they may never see, but know that they can’t miss because of the importance of early diagnosis.”
The disease is question is calciphylaxis, a serious and rare condition that occurs when calcium builds up in the small blood vessels of skin and fat tissues. Researchers are still not sure what actually causes calciphylaxis, and believe a variety of factors must be present for the disease to develop. It almost exclusively affects patients experiencing end stage renal disease, and is found in less than 5% of those cases. Three out of four sufferers are female. Obesity, diabetes and the use of blood thinning medications are other risk factors.
Patients with calciphylaxis face a grim prognosis, with only a 40-20% survival rate. Those who do survive are often faced with the amputation of diseased limbs. “Early diagnosis is really the best hope for those with this disease,” said Sarguroh. “Removing diseased tissue as soon as possible and using evidenced-based new therapies such as sodium thiosulfate and even the flesh-cleaning larvae of greenbottle flies give patients the best chance for stopping the spread of calciphylaxis throughout the body and internal organs.”
Being able to make that early diagnosis was the focus of this meeting of LEA-UP, Lower Extremity Amputation and Ulcer Prevention, founded by Tanquilut of Vascular Specialists in Olympia Fields, New Lenox, Orland Park and Chicago. LEA-UP is an open group of primary care physicians, podiatrists, nephrologists, infectious disease specialists, vascular surgeons, nurse practitioners, and other medical professionals from area hospitals including Advocate South Suburban Hospital, Palos Community Hospital and Silver Cross Hospital. LEA-UP meets quarterly over dinner to listen to presenters and discuss treatment methods, case studies and results. The meetings also offers opportunities to introduce medical products and services to these professionals.
“Knowing the early signs of calciphylaxis, what tests to perform, how to diagnosis, and when to refer to specialists, absolutely saves lives and limbs,” said Tanquilut, who is fellowship-trained in vascular and endovascular surgery. “That’s why the multi-disciplinary approach of LEA-UP is so important. We’re not just educating one kind of doctor or specialist. We’re trying to ensure that everyone who will put eyes on an at-risk patient understands what they’re seeing and the steps to take to give that patient the best results possible for each individual case.”
Symptoms of calciphylaxis include small nodules on the skin that develop into black lesions. “Unfortunately,” said Sarguroh, “because this condition is rare, physicians may diagnose these symptoms as peripheral vascular disease (PVD) or cellulitis. There are no lab tests for calciphylaxis and tissue sample testing can be unreliable. The best choice to date to diagnose is a bone scan, but if a professional is thinking PVD, they wouldn’t order this type of test. Early intervention gives patients the best chance of survival, so proper, timely diagnosis is vital.”
Dr. Maureen McShane, a podiatrist with Palos Medical Group, agrees. “I formerly practiced at Cook County Hospital for over a decade and saw patients who were already in a crisis situation, facing amputation. Unfortunately, there was not a lot of preventative care going on. In my current practice, I am able to better educate patients about diabetes, nutrition and complications from poor health practices. I came here tonight to learn something new, to hear all the different perspectives about helping patients.”
“Knowing when to send patients to another specialist, such as a vascular surgeon,” said Dr. Mark Gagnon, “is important for their long term recovery and health.” The podiatrist with Advanced Podiatry in Orland Park and Crestwood noted that this event was his first LEA-UP meeting, but “I’ve know Tanquilut for years. I knew the content would be valuable. Calciphylaxis is really a new topic for me. I haven’t seen it before, but if I ever run into this in a patient, I will know what I’m looking at.”
Ultimately, that’s the goal of LEA-UP. “By introducing these topics – conditions that affect limbs and usually lead to amputation – to a variety of medical professionals and different specialties throughout the south and southwest region, we will be improving the quality of life for our patients. It has to be a multi-disciplinary approach. It’s vital that, as a community, we have discussions, learn from one another and make connections for necessary, trusted, medical referrals. We have to all work together to preserve limbs and save lives,” said Tanquilut.
LEA-UP meets quarterly over a sponsored dinner and the events are open to any health care professional. Interested professionals should email jcardenas@vascspecialists.org or call 815-824-4406 and ask for extension 130.
Tanquilut is committed to the non-competitive, collaborative approach of LEA-UP. “It’s simple. A multi-disciplinary approach gives patients the most optimal care with the best outcomes possible.”
