9 posts from January, 2014

PatientsLikeMe Out of the Office: Priya Raja talks about cervical cancer awareness

Posted January 30th, 2014 by

My mentor, Professor Lynette Denny, and I

Hi there everyone, my name is Priya and I work as a research assistant on the Health Data Integrity Team at PatientsLikeMe!  Given that it’s cervical cancer awareness month, I wanted to share with you all a global perspective on why screening can be so important. While a Pap smear is something that most women receive during routine visits to the gynecologist, this screening test is unfortunately out of reach for many women around the world. The consequence? Women can show up at the clinic with cervical cancer that has spread throughout their body. And in countries that are resource-strapped for treatments like chemotherapy and radiation therapy, the outlook for these women is, sadly, often very grim. The quandary, however, is that a Pap smear is a very low-cost test that can detect cancer up to ten years before it happens. Even more, being screened just once can reduce the likelihood of having cancer 70% to 80%, and early detection can guarantee nearly a 100% chance for a cure.1

 

 

Patient room where I did interviews

 

As a passionate advocate for women’s health and disparities in cancer care, I was inspired to spend three and a half months speaking with low-income women diagnosed with cervical cancer at a hospital in Cape Town, South Africa—where a Pap smear is a luxury for most women. In South Africa, cervical cancer is the second most fatal cancer in women and is known particularly as a ‘killer of poor women,’ because those of low-income status are the least able to access this screening test.2 South Africa’s unique history with Apartheid, race and socioeconomic status remain linked twenty years later, and the voices of these women remain largely unaccounted for. When I interviewed these women, it was very important to me to have them be the center of this research, and to understand how their own unique journey with cervical cancer—from the first symptoms to finally getting treatment—fit into the greater contexts of their lives and values. I found that a variety of factors contributed to the fact that these women appeared at the hospital too late, but that it mostly boiled down to the interaction between providers and patients.

 

 

Groote Schuur Hospital

We know that patients and providers don’t always speak the same way about illness and disease. For these women, many of whom were going to a hospital for the first time, when providers used words like biopsy, cervical cancer, or radiotherapy, it was a foreign language to them. Instead they described these experiences as “cutting a piece,” or “cancer on the mouth of the womb,” or “being put under a machine.” These are but a few examples of the communication disconnects that led providers to disregard their patients’ inner sense that something was wrong, which led to patients being denied care. Furthermore, some providers weren’t equipped to diagnose cervical cancer, instead mistaking it for an infection, and they repeatedly turned away their patients with antibiotics or pain tablets.

I used the stories of these women to create a set of recommendations for providers, and it turns out that getting these patient voices front and center worked! Recently, my recommendations were implemented by the Department of Health in the Western Cape Province at the same hospital I worked at. They are now preparing to run workshops for providers in the greater Cape Town area to more effectively train them not only on how to identify cervical cancer, but also how to speak with and teach their patients about cervical cancer in a way that makes sense to them.

PatientsLikeMe member PriyaRaja


1 Mosavel, Maghboeba, et al. “Cervical cancer attitudes and beliefs—A Cape Town community responds on World Cancer Day.” Journal of Cancer Education24.2 (2009): 114-119.

Denny, L. (2006). Cervical cancer: the South African perspective. FIGO 26th Annual Report on the Results of Treatment in Gynecological Cancer. International journal of gynaecology and obstetrics: the official organ of the International Federation of Gynaecology and Obstetrics, 95, S211.

2 Menaker, D. (1995, August 22). Apartheid’s cruel legacy: Death by cervical cancer. San Francisco Chronicle. Retrieved from http://www.sfgate.com/news/article/Apartheid-s-cruel-legacy-Death-by-cervical-cancer-3133619.php


Living with hope – An interview on AKU with Alycia and Nate

Posted January 27th, 2014 by

We’ve had the pleasure of talking with and featuring many PatientsLikeMe members on the blog over the years, but Nate is the youngest by far. He’s just 5 years old and is living with Alkaptonuria (AKU), a rare metabolic disease, sometimes called Black Bone Disease. Recently, we had the chance to chat with his mom, Alycia, who spoke with us about Nate’s experiences with AKU and her role and philosophy as his caregiver.

To get started, what would you like everyone to know about your son?

My son is an extremely happy and energetic 5 year old. He has recently started school and loves playing sport. His favourite sports are cricket and Australian Rules Football. He has a younger brother who he loves getting into mischief with. He also has a rare Metabolic disease called Alkaptonuria. However, we have chosen not to tell him about his disease at this stage.

Do you remember what the first sign or symptom was? And can you talk a little about the diagnosis process?

The only symptoms he had were black urine and dark ear wax. We never really thought much about his dark urine because we only noticed it when he had accidents during toilet training and as he is our first child we didn’t know any better. When Nate was 3 he was hospitalised with post infectious glomerulonephritis. About 6 months later his kidneys had recovered but his test results were still not normal. With further investigations he was diagnosed with Alkaptonuria. Now the unusual urine stains make sense.

Can you tell us a little about your day-to-day experiences as a caregiver?

Due to the slow progression of Alkaptonuria, caring for Nate on a day to day basis really isn’t much different than for any other mum. The only things I do are to ensure that his ears don’t have any visible ear wax, as we’re very conscious of him being picked on. I also have to take him to a few extra medical appointments as he is under the care of the Metabolic team.

How has connecting to other caregivers, or others living with AKU, on PatientsLikeMe impacted you?

I was devastated when Nate was diagnosed with AKU and even more so when I found out how rare it was. I wanted to gather as much information as possible to help me understand and to help ease the way I felt. It wasn’t until I found the AKU Society in the UK and then PatientsLikeMe that it helped to alleviate some of those feelings. It’s been great to have a group of people who truly understand the disease and who you know will never judge you for any question you ask.

As a carer it’s my job to research as much as I can about AKU so when the time is right to tell Nate I can provide him with this information and he can connect with everyone on PatientsLikeMe himself. PatientsLikeMe has really had a positive impact on my life, at times it’s been comforting to know what potentially could happen to Nate and the quality of life he may have, but the benefits of having access to this site help outweigh some of these feelings.

If there was one thing you could tell everyone who is caring for someone living with AKU, what would that be?

Use all the resources out there like PatientsLikeMe and the AKU Society, which are amazing tools for reaching others who understand AKU better than anyone, fellow patients and carers, to research as much as you can about the disease. I believe that there is a potentially bright future for AKU patients if Nitisinone becomes available.

I also greatly believe if you’re a caregiver to a child with AKU, to let them be a child and let them have the childhood every child deserves and don’t weigh them down with their disease until you absolutely have to. Unfortunately the AKU will always be there.