My Hero

I would like to dedicate this posting to someone who is very special to me and has taught me much during the past few years about how to live and enjoy life.

Many of you know that about three years ago my sister was diagnosed with a very rare and deadly disease called Amyloidosis. She has been fighting this terrible disease and has had many ups and downs. Through it all there has been one thing that has never faltered, her unflappable spirit to live every day the best she can and to serve others. She has started a local support group and works with doctors and patients in her area to educate and support them as well as to find a cure for this disease. I have posted an email below that she recently sent trying to raise awareness about rare diseases. I hope you will take the time to read it. If you do and are interested, I also invite you to read the blog she kept during a good part of her journey through treatments. If you read it, you will be inspired!

Thank you for your attention and support.

Elder and Sister Heninger

Linda's blog-  lindadanielson.blogspot.com

My Sister Linda

 
Hello to all of you. I warn you this is a LONG email but I ask that you please take the time to read it. There are pictures at the end. :)

I have never sent an email to a group before. I am sorry that I didn't sent it personally to each of you.

I am trying to increase awareness of Rare Disease Day this year. This day is organized by Eurodis( countries within Europe) There are countries worldwide honoring this day. I would love each of the states we live in to be a part.
Theme: Care - Slogan: Join Together for Better Care

Caring for people living with a rare disease has many facets. Some patients have access to medicines while others have no treatment available. Some patients are fairly independent while others require intensive physical assistance and equipment. Care can consist of special equipment, expert medical consultation, physical therapy, social services, medicines, respite for family members, and much more. For most children and adults living with a rare disease, primary care is provided by family members.

Rare Disease Day 2014 focuses on care and encourages everyone in the rare disease community to Join Together for Better Care.

Patients and their families who feel isolated by the rarity of their disease should know that there are more than 6000 different rare diseases affecting over 60 million people across Europe and North America alone and millions and millions more throughout the world. Most of these diseases are genetic, serious, chronic and debilitating. Each disease is different, but they affect people in similar ways. Joining together can help patients and their families find common solutions for care and remind them they are not alone.

Healthcare professionals, researchers, pharmaceutical companies, and policy makers also frequently feel isolated in their struggle to find and provide care for rare diseases. Experience shows that bringing together scattered knowledge and resources for people living with rare diseases is the most efficient and effective way to mobilize the care patients and families need and deserve.

As you know I have a rare disease. To qualify as a rare disease 1 person out of 200,000 is affected by the disease. My disease is 1 in 3 million people in the United States  get it. I also have relatives who have children with rare diseases whose disease is even more rare. In my disease 40% of people with my diagnosis, die within 6 months of diagnosis. Where the disease is multi-organ it quietly, but quickly damages the organs, often irreversibly, then only about 20% of people qualify for stem cell transplants. The guidelines are much stricter now than when I was diagnosed. They actually were changed within a couple of months after my stem cell transplant. It was the "perfect time" for me to get sick, (if there is a perfect time to get this) for treatment, as well for insurance coverage. I truly know I am extremely blessed. Has it been easy...NO! But I want you all to know, that I wouldn't trade what I have experienced and learned (and hopefully can share and help others) to go back where I was. I have a firm testimony Heavenly Father lives, and knows each and every one of us. Christ was beside me every single day for over a year. At a few times, He literally totally carried my load. Most of the time allowing me to participant in the load so I would appreciate and know when He carried me. Because of this trial, hopefully I am becoming more of the person, Heavenly Father knows I can be.

I have set a goal to spread awareness of rare diseases, to hopefully remind people and their physicians to consider rare diseases as an option when dealing with patients, to increase awareness in hope more research could be funded in learning more about these diseases and finding treatment for them. The government just cut funding for research of treatment for rare diseases along with limiting what treatment options will be covered.

I have sent a request to the governor of Utah asking for a "request for proclamation" to proclaim February 28 as Rare Disease Day in Utah in hopes of also getting some press coverage.

I am inviting each of you, wherever you are to be a part of this awareness; even if it's only to google Primary Amyloidosis (on either Mayo or Boston University) and learn about it. Remember the list of symptoms. Perhaps a neighbor, friend or loved one may someday experience several of those without being diagnosed. Your memory may then recall this disease. Remember early detection is so important. If you would like copy the banner off my email and send it to others please do so. Share the information and about rare disease day with your employment.

 On Feb.  28  8 pm Utah time, I am suggesting lighting a candle for those with or who have passed away from a rare disease. The other thing I would ask, if you are interested or wiling, take a picture of your group of friends, family or whoever holding hands, holding them up in the air (representing coming together for better care). Send an email with a copy of the photo to me. I would like to collect and submit them to the National Organization of Rare Diseases( NORD) showing how we honored Rare Disease Day and possibly even submit some to the Utah newspapers, again increasing awareness.

Here is the logo 


Another idea for a picture. Israel did this.


Whether you are with your family at home, 10 people in an office, 100 people at a conference or 1000 people at a public gathering: RAISE AND JOIN YOUR HANDS to show your solidarity with rare disease patients around the world! Help us show we are all mobilised for people living with rare diseases and driven by the same objectives.

This symbolic gesture can be done before the Day or part of the activities you have already planned on the Day. Remember to send the picture email to me.
                 You get the idea..


You could use either of these logos for facebook or whatever social media you use.

               




If you would like to learn more about this search for  rare disease day. There is a bunch of information about it even a map showing which countries around the world have patient groups preparing to honor this day. Only 2 places in North America.  I would like to be able to list a few from a representation of this group. Pass it along, let's join hands together!!

Thank you for reading this.  Thank you most of all because every single one of you who are receiving this supported me through my most difficult time. I love and appreciate you.

Love,
Linda