22 posts from November, 2015

Meet Christel from the PatientsLikeMe Team of Advisors

Posted November 29th, 2015 by

We wanted to take a minute to introduce you to Christel, one of your 2015-2016 PatientsLikeMe Team of Advisors. Christel who was 12 years old when she was diagnosed with type 1 diabetes, shares openly that she spent a lot of her teens and twenties ignoring its existence.

But 32 years later, Christel has made peer support and advocacy her focus. She’s founded a psychosocial peer support conference for adults with diabetes (and caregivers, too) and co-founded an advocacy organization for easy and effective diabetes policy advocacy. Christel also writes a popular patient blog, ThePerfectD.com, and speaks publicly about her experiences.

In a recent interview (below) she talks about societal stigmas surrounding diabetes and how important it is to connect with others who share this condition.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

Society thinks that diabetes is a punchline; something that shouldn’t be taken seriously.

We need to stop making fun of diabetes. All those pictures of desserts with the hashtag #diabetes? People with diabetes aren’t laughing. In fact, it only perpetuates the ignorance.

Those who are diagnosed often don’t get the proper education and care they need, and don’t talk about it, as the stigma surrounding diabetes due to misinformation prevents us, as a society, to address how to support people with this disease.

Until that changes, the increase of diabetes diagnoses will continue. The latest statistics show that 1 in 3 U.S. adults could have type 2 diabetes by 2050 if we don’t change our attitude and educate the public on what diabetes is, what it isn’t, and what can be done. (And the number of type 1 diabetes diagnoses are also increasing, although we don’t know why.)

What needs to happen? Education, compassion, and a willingness to speak up when someone makes a joke about diabetes.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

29 million Americans have a diabetes diagnosis (that’s 11% of the population!) and 86 million more have a pre-diabetes diagnosis, yet there is a lack of true awareness about what the disease is and the gravity of a diabetes diagnosis.

Type 2 diabetes is a metabolic disease. Individuals diagnosed have issues with the insulin they produce; not enough insulin or a resistance to the insulin they do have. People with Type 2 can manage their diabetes a number of ways: diet, exercise, oral medications, and insulin – or a combination of any of these.

Type 1 diabetes (which I have) is an autoimmune disease, and we comprise about 5% of the diabetes community. My body attacked the insulin producing cells in my pancreas, so I must inject insulin to manage my glucose levels. Without insulin, bluntly stated, I’m dead within a few days (if not sooner).

Even with insulin, I walk a fine line every day attempting to keep my blood glucose levels in range. Too much insulin in my body and the consequences can be immediate: mild impaired cognitive function to seizures, coma, or death. But too little? The consequences can be just as devastating: long-term complications and/or the poisoning of my body through ketoacidosis.

I’ve oversimplified these two main types (there are other types of diabetes!), but here’s what shouldn’t be oversimplified: insulin is not a cure, you cannot “reverse” or “cure” diabetes (you can maintain), you don’t get diabetes from being fat, you don’t get diabetes from eating too much sugar, and if you ignore your diabetes, the complications are deadly.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

Grieve.

It’s perfectly acceptable to fall apart and mourn the life before your diagnosis – and your caregivers should do the same. You can ask: “Why me?” and shake your fist at the sky.

There will be plenty of time to be brave and courageous and inquisitive. Get the grief out of the way first. Don’t put it off or deny it as I did, years after my diagnosis, because grief is inevitable.

But don’t get stuck in your grief. Find others who can help and support you and guide you through your next steps in the journey.

How important has it been to you to find other people with your condition who understand what you’re going through?

Diabetes can be a lonely disease. For years after my diagnosis, I didn’t know another person with type 1 diabetes and wished that I could talk to someone about the daily challenges and the fears.

The Internet opened up my world and gave me confidantes, compatriots, and support from all over the world. Without the ability to get help online and share my thoughts and experiences, I truly believe that I would not be living well with diabetes today.

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Still leading a full life – An interview with IPF member David

Posted November 27th, 2015 by

David’s (darbygreenboy) username comes from the village in the English countryside where he lives and is still an active member of the community. We caught up with this grandfather of 10 – a former business owner, mayor and leader of the town council to talk about living with IPF. Here’s what we learned …

David surrounded by his family one Father’s Day.

Tell us a little bit about yourself. What are some of your hobbies and passions?

I am 70 years young and live in England in a village called Darby Green in the Parish of Yateley. It is in the countryside, but only 30 miles from London. I live there with my wife of 48 years, Rose, whom I met 51 years ago at Youth Club and we have been together ever since. We have 3 children: Abbie, Emma and Stephen, and 10 grandchildren aged from 3 months to 13 years old and they all live nearby.

I had my own business for 30 years, but I am now retired. I am a Yateley town councillor and have been for the last 12 years. I was also mayor of my town some 8-9 years ago and leader of the council for 7 years.

I love travelling and before being diagnosed with IPF, we traveled many times to the USA, including touring the Deep South, California, Alaska, New York and many other wonderful places. Now, unfortunately, we can no longer obtain reasonable priced medical insurance to travel to the U.S.

I love to watch football (soccer) and was a keen tennis player until the IPF.

You say in your PatientsLikeMe profile that you were diagnosed with IPF after getting out of breath climbing stairs. What were your thoughts and feelings when you received this diagnosis?

My first thoughts after being diagnosed with IPF was one of stunned realization of my own mortality. I had read on the Internet that the median life expectation was 2-3 years, that was 3 years ago. The first year after being diagnosed I caught a cold that went to my chest. This developed into a type of pneumonia and I was very ill and it took me nearly 3 months to feel near normal again.

What are some changes that happened in your life after being diagnosed? What in your life helps you to better manage your condition?

This made me realize I had to make changes and try to avoid infections. I no longer went to watch winter soccer matches.When the grandchildren have colds they do not visit. If I am at a council meeting and a councillor has a cold they tell me and we avoid contact.

I know it sound severe but it has kept me free from colds for 18 months now. I carry in my travel case a 2-week supply of antibiotics as well as prednisone prescribed by my doctor in case I get a chest infection whilst on holiday.

All that said, I lead a fairly full life. I help with picking up the grandchildren from school and they visit every week. I am okay at walking reasonable distances on the flat, but can no longer run about with the children or play tennis.

Can you describe your experience on PatientsLikeMe? What keeps you coming back to the site?

I find PatientsLikeMe essential and in many ways reassuring. If I am feeling down after getting bad side effects from either drugs or IPF itself, I will go on line to see what others have experienced. And this I find, in a strange way, comforting to know I am not alone. 🙂

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