4 posts tagged “hope”

Day-by-day, hand-in-hand

Posted February 28th, 2015 by


All around the world, everyone impacted by a rare disease is taking everything day-by-day. But they can take each day hand-in-hand with the help and support of others. Today, on Rare Disease Day (RDD), EURORDIS (Rare Diseases Europe) and its global partners are calling on everyone to lend a hand to anyone affected by a rare disease.

RDD’s international theme is “Living with a rare disease” because every patient’s story and needs are different, and only by sharing our experiences and raising awareness can we all hope to improve the lives of those living with a rare disease. It’s also about the million of parents, siblings, grandparents, aunts, uncles, cousins and friends that are impacted and who are living day-by-day, hand-in-hand with rare disease patients.1

Check out the official video below:

According to the Global Genes Project, there are 350 million people living with a rare disease around the globe. Just how many is that? If you gathered those people into one country, it would be the third most-populous country in the world. There are more than 7,000 identified rare diseases, from skin conditions to progressive neurological disorders, and more are being discovered every day.2 Here’s how you can get involved in spreading the word:

Rare diseases have a personal connection with PatientsLikeMe – our co-founders’ brother, Stephen, was diagnosed with ALS in 1998, and their family’s experiences with the condition led to the beginning of PatientsLikeMe. In 2012, we partnered with the Global Genes Project to create the RARE Open Registry Project to help those diagnosed find others like them in one of the over 400 rare disease communities on the site, and launched the first open registry for people with alkaptonuria (AKU) with the AKU Society in early 2013. We also accelerated our focus on enhancing the idiopathic pulmonary fibrosis (IPF) community through a collaboration with Boehringer Ingelheim. And now, the IPF community on PatientsLikeMe is the largest open registry with more than 3,700 members …and counting.

Share this post on Twitter and help spread the word for rare diseases.


1 http://www.rarediseaseday.org/article/theme-of-the-year-living-with-a-rare-disease

2 http://globalgenes.org/rare-diseases-facts-statistics/


“Strength will come, somehow, from somewhere” – PatientsLikeMe member Glow4life shares her journey with lung cancer

Posted January 26th, 2015 by

PatientsLikeMe member Glow4life was diagnosed with lung cancer (adenocarcinoma) this past June, and her story is a testament to never losing hope. She recently shared her experiences in an interview, and she spared no details in describing her challenges. Despite her terminal diagnosis, four rounds of chemotherapy and the sudden loss of her husband, Glow4life has remained positive, and she’s learned to take every day as it comes and live in the moment. Learn about her journey below and how she shares love and hope whenever she can.

How did you react after getting diagnosed with lung cancer in 2013? What was the diagnosis process like?

I had a routine X-ray in February 2013, after attending A & E with chest pains (which turned out to be nothing). A few days later I received a letter asking me to return in 6 weeks for a follow up X-ray, as there was a suspect area, probably scarring from a previous chest infection but best to check. My general practitioner reassured me it was unlikely to be sinister, if cancer was suspected I’d be looked into immediately. I thought no more about it and returned for the repeat X-ray as scheduled. The following day my GP rang me to tell me there was a tumor on my left lung that required further investigation, and gave me the number to ring for a scan, which took place within a couple of weeks. I asked if this was likely to be cancer, and he told me it almost certainly was. The scan did, in fact, reveal a cancerous tumor, and I was referred for a PET scan and bronchoscopy. On the 27th of June, I was seen by the specialist who gave me the news that adenocarcinoma was confirmed, and had spread to the other lung, and right adrenal gland, and was given an appointment with an oncologist, who would assess appropriate chemotherapy. It’s impossible to describe how this feels, but you know that your life has changed forever. I saw the oncologist on the 7th of July and was offered a course of cisplatin/premetrexed, a course of 4 to 6 treatments, every three weeks, in an attempt to shrink the tumors and prolong life.

I was told my prognosis was terminal, and that with successful chemo, 20 percent of patients survive a maximum of 12 months. If we were shocked before, nothing compared with this, it was like being hit by a wrecking ball. I started my chemo on the 23rd of July and had the fourth session in October, which was followed by a CT scan. This showed that the tumors had shrunk and no further chemo was necessary. A maintenance course of premetrexed was available but not recommended, as the chemo had made me very ill. Since then I have been on watch and wait, every three months, last time extended to four. I go for X-ray and blood tests before my appointment with Dr. Brown, my oncologist. My cancer is stable, though not cured, and my general health is good, as is my quality of life. I do tire very quickly, but then I’m getting on a bit!

You’ve received treatment for your tumors – what’s it like being on a “watch and wait” plan?

Being on ‘watch and wait’ is like having the sword of Damocles hanging over your head, you never know when it might drop. But I try not to dwell on that, it would be wasting the extra time I have been given in pointless worry and speculation. I try to forget about it between visits, and for the most part I do, though I must admit to a certain amount of anxiety in the couple of weeks prior to the next appointment.

How has your day-to-day life changed since being diagnosed and treated for lung cancer? 

Well, I thought the worst possible thing had happened to me and things couldn’t possibly get worse. But I was about to find out different. It’s hard for me to answer this objectively, as 3 months after the diagnosis, and while I was in hospital having my 2nd chemo, my husband Tim was found dead at home, having suffered a cerebral occlusion. Tim was 11 years younger than me, and in perfect health, so the shock was profound, for all of us. I passed the next few months in a fog of chemo and grief, it was the hardest time imaginable, but the days passed and I got through it.

My life has changed beyond all description and I can say with all honesty that living without Tim is much harder than living with cancer. Loneliness is my biggest issue now, and wishing he was here to help me through this, which I know he would wish he was here to do. One thing I did learn was that having a terminal illness doesn’t make us closer to death than anyone else, and that life can be taken from any of us, at any time. So it’s important to take each day as it comes, and make each one count. When I die, nothing will be left unsaid, no actions regretted or opportunities missed.

I fear death much less than I did, while still embracing what life is left to me. We all have a time to leave this world and move on to whatever adventure lies beyond, and I know that the time is coming when Tim and I will be reunited in spirit. I will be sad to leave my beautiful family, but happy that I’ve been given this time in which we’ve all been able to prepare, and make the very most of the chance to let them know how much I love them. And we all have to leave sometime!

What have you learned from using the InstantMe feature on PatientsLikeMe?

What I’ve learned from PatientsLikeMe is that I’m not alone in this, so many of us are dealing with similar issues, and that while cancer is different to each individual, what is the same is that most of us are devastated by the effect it has on our loved ones. It’s so hard to see their sorrow, and know you are the cause and can do nothing to stop it. I’ve also learned that many people are much worse off than I am, having succumbed so much faster, while I am still here and comparatively well. Each time I go for a scan/bloods/chemo, or to oncology I see the waiting room full, and think, so many of us, all with similar fears and trepidation of what is coming our way.

We read that your motto is “Never give up, never give in” – along with that, what else would you say to someone who has been recently diagnosed with lung cancer?

What I would say to anyone recently diagnosed is this: You will wonder how you are ever going to find the strength to cope, how do people do it? But be assured that the strength will come, somehow, from somewhere, and you’ll find your way through. Take one day at a time, and make each one count. Prepare for every eventuality, but never lose hope. Follow good advice, not fads. Try not to look too far ahead and live in the day, or even the moment. Don’t think of yourself as dying from cancer, but as living with it. One of Tim’s favorite sayings, when the times were tough, was “Head up, son” I say that to myself every day.

And don’t Google! You’ll frighten yourself with out-of-date misinformation and meaningless statistics. Listen to the experts.

Finally, share love and hope wherever you can, while you can.

Share this post on Twitter and help spread the word for lung cancer.


Research, support and hope for spinal muscular atrophy

Posted August 11th, 2014 by

If you know PatientsLikeMe, you know that neurological conditions take us all the way back to our beginning. Stephen Heywood, the brother of our founders Ben and Jamie, was diagnosed with ALS back in 1998 at age 29. Today, almost ten years after PatientsLikeMe was created, thousands of members living with ALS and other neurological disorders are sharing their stories and donating health data to help improve the lives of others and contribute to medical research. And in the spirit of Stephen and everyone living with these conditions, we’re recognizing Spinal Muscular Atrophy Awareness Month this August.

Spinal muscular atrophy (SMA) affects the nerves responsible for movement, including breathing and other bodily functions. It is inherited through genes passed on by parents who are carriers of the genetic code.

SMA affects people of all ages, genders and backgrounds. There are four types of SMA – Types 1, 2 and 3 all affect children and adolescents, while type 4 is usually limited to those above the age of 35. And although SMA is classified as a rare condition, think about this: SMA affects approximately 1 in every 6,000 babies, and about 1 in 50 people are carriers for the condition.1

So what can you do this August to raise awareness for SMA? Orange and purple are the two colors designated for SMA awareness, so wear or display them and let people know why you are! The Families of SMA (FSMA) also organizes many awareness events around the world, everything from walks to dinners to Bowl-A-Thons. Check out their website and find an event near you.

Share this post on twitter and help spread the word for Spinal Muscular Atrophy Awareness Month.


1 http://www.fsma.org/FSMACommunity/understandingsma/quickfacts/


Uniting for hope on Rare Disease Day 2014

Posted February 28th, 2014 by

hopeToday, healthcare professionals, research advocates and many people living with rare conditions are coming together to observe Rare Disease Day. It’s all about raising awareness for rare and genetic diseases, improving access to treatments and learning more about what exactly makes a condition rare.

In the United States, a disease is considered rare if it affects less than 200,000 people at any given time. Rare diseases affect almost 1 in 10 Americans, and many times, they cause common symptoms that can be mistaken for other conditions.1

 

All across the world, people are raising awareness for rare disease. Here are just a few things you can do to join them.

  • Wear your favorite pair of jeans today to help the Global Genes Project promote the Blue Denim Genes Ribbon
  • Use the hashtags #CareAboutRare and #WRDD2014 and share them with @GlobalGenes on Twitter and Facebook
  • Find an event in your state and participate in local activities
  • Print out this flyer, take a photo of yourself with it, and submit it to Handprints Across America

Rare diseases have a personal connection with PatientsLikeMe – our co-founders’ brother, Stephen, was diagnosed with ALS (Lou Gehrig’s Disease) in 1998, and their family’s experiences with the condition led to the beginning of PatientsLikeMe. In 2012, we partnered with  the Global Genes Project  to create the RARE Open Registry Project to help those diagnosed find others like them in one of the over 400 rare disease communities on the site, and  launched the first open registry for people with alkaptonuria (AKU) with the AKU Society in early 2013. We also accelerated our focus on enhancing the idiopathic pulmonary fibrosis (IPF) community through a collaboration with Boehringer Ingelheim. And now, the IPF community on PatientsLikeMe is the largest open registry with close to 1,900 members …and counting.


1 http://rarediseaseday.us/about/