DDD patients and friends- "Completing Stories"
Steve's journey of 2711 miles is for DDD patients. Steve, besides being a Prof., and a hero, is also a professional storyteller. Every choice we make creates a story- sometimes the stories are boring, exciting, triumphant or brilliant failures. But they are ours. Steve is setting out to create some stories with his trip and intrinsic to his story, is the story of how this trip will impact the lives of many others- me and you, for starters.
Kidneeds does not have any federal or state grant money or any major funding sources. 100% of Kidneeds money for research comes from the friends and families of DDD patients. None of them are professional fundraisers and in stepping outside their comfort zone, each person who has held a fundraiser has a story to share.
Fundraisers, please share your fundraising challenges and unexpected, funny occurrences at fundraisers.
Fellow DDD patients, Steve wants to hear stories of your challenges with DDD and how you overcame them. He wants to hear how someone went the extra mile to help you on your disease journey. You don't have to leave your name if you don't want to. You can email your stories to endurocure@gmail.com and I'll get them to Steve, but I hope you'll let them be shared. Your stories become part of Steve's journey for the 2711 miles. He is looking to how each of us has overcame challenges, for his inspiration and motivation to keep going when the road less traveled rises 1,000 ft in 1/3 of a mile.
The Kidneeds story is very like this journey. It is a road that many believed we couldn't travel to the end where a treatment lay. There were many reasons, the disease was too complex, no one was studying it, no one wanted to study it, the fact that there aren't many of us to study and the bit about there being no way to fund research. The choice we all make is the same as Steve has made three times. We can sit on the sidelines and hope, or we can jump in and do our best to change the outcome. Steve could easily have stayed on the sidelines. It would have been the wisest thing to do for his own safety. But he didn't and 5 people are alive today because of his choice and his courage.
We are getting close to a treatment due to the extraordinary committment of the Kidneeds' scientists, the research participation of some of the patients and our many generous donors. Steve has already titled the story of this journey "Completing Stories" because he wants to help us complete the Kidneeds' story- find the treatment. We invite you to become part of this story by sponsoring miles, getting others to sponsor them and sharing your stories. We hope you choose to join Steve, who is known for his courage to act on behalf of others. Because, the others in this story are us, the DDD patients and families. Thanks, Jenna and Lynne
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Jami
Steve's journey of 2711 miles is for DDD patients. Steve, besides being a Prof., and a hero, is also a professional storyteller. Every choice we make creates a story- sometimes the stories are boring, exciting, triumphant or brilliant failures. But they are ours. Steve is setting out to create some stories with his trip and intrinsic to his story, is the story of how this trip will impact the lives of many others- me and you, for starters.
Kidneeds does not have any federal or state grant money or any major funding sources. 100% of Kidneeds money for research comes from the friends and families of DDD patients. None of them are professional fundraisers and in stepping outside their comfort zone, each person who has held a fundraiser has a story to share.
Fundraisers, please share your fundraising challenges and unexpected, funny occurrences at fundraisers.
Fellow DDD patients, Steve wants to hear stories of your challenges with DDD and how you overcame them. He wants to hear how someone went the extra mile to help you on your disease journey. You don't have to leave your name if you don't want to. You can email your stories to endurocure@gmail.com and I'll get them to Steve, but I hope you'll let them be shared. Your stories become part of Steve's journey for the 2711 miles. He is looking to how each of us has overcame challenges, for his inspiration and motivation to keep going when the road less traveled rises 1,000 ft in 1/3 of a mile.
The Kidneeds story is very like this journey. It is a road that many believed we couldn't travel to the end where a treatment lay. There were many reasons, the disease was too complex, no one was studying it, no one wanted to study it, the fact that there aren't many of us to study and the bit about there being no way to fund research. The choice we all make is the same as Steve has made three times. We can sit on the sidelines and hope, or we can jump in and do our best to change the outcome. Steve could easily have stayed on the sidelines. It would have been the wisest thing to do for his own safety. But he didn't and 5 people are alive today because of his choice and his courage.
We are getting close to a treatment due to the extraordinary committment of the Kidneeds' scientists, the research participation of some of the patients and our many generous donors. Steve has already titled the story of this journey "Completing Stories" because he wants to help us complete the Kidneeds' story- find the treatment. We invite you to become part of this story by sponsoring miles, getting others to sponsor them and sharing your stories. We hope you choose to join Steve, who is known for his courage to act on behalf of others. Because, the others in this story are us, the DDD patients and families. Thanks, Jenna and Lynne
Read Comments Posted by Others...
Jami
Steve took a break from riding to help me pass the time on dialysis.
5 comments:
Those of us with Dense Deposit Disease did not choose our path. In fact, if I had the option, I would not have chosen to walk this same path. It’s a very hard path. But the other day I was thinking about my life, and how it would have been different if I didn’t have this disease. If I hadn’t sat in the doctors office 17 years ago and been told that I had this mysterious disease that had no cure and had barely been researched, my life would be so much different now. I wouldn’t have all those struggles and triumphs that led me to this point in my life. I wouldn’t have realized the true goodness in other people. I wouldn’t have known my own strength.
"All the adversity I've had in my life, all my troubles and obstacles, have strengthened me. . . . You may not realize it when it happens, but a kick in the teeth may be the best thing in the world for you. " This quote was attributed to Mr. Walt Disney, and it is a quote we should all live our life by. No one knows their true strength until the moment they need that strength, and patients with DDD are prime examples of this.
My own story is one of triumphs and tragedies. On October 9th, 2008 I will celebrate the 7th year of my current transplant, and with it I will celebrate another year of a wonderful life. It hasn’t always been easy, but it’s always been blessed! Shortly before my 18th birthday I don’t think anyone thought I’d live to even see 18. I just turned 27. DDD is about beating the odds, and never letting the odds beat you.
My first transplant happened in 1999, shortly after my high school graduation. I had been on dialysis for only a short amount of time, since February of that year. My mom donated the kidney to me, and for one year I lived the life of a healthy adult. Unfortunately that transplant failed, as so many others do. I went back on dialysis and that was a very dark time in my life, one I hope I never have to repeat. On October 9th, 2001 I was blessed to receive a kidney from my dad. How amazing that I have two parents that risked everything to give me not life once, but twice. When you open the paper today and the headlines about parents abusing their children, remember that there are good parents out there…amazing parents.
I can still remember when I got the news that I was getting my second transplant. It was shortly have 9/11. My friend Manda and I were sitting at the mall, getting signatures on a card that we had made for all the victims of the 9/11 attacks. During a time when I felt so hopeless, I was given a ray of hope. It was such a wonderful feeling.
Right now I’m currently working on my Bachelor’s degree in Psychology. My hope is to eventually go on to get my Ph.D. and become an organ transplant counselor. I believe that my experience can help someone who may be feeling scared and alone. My trials and tragedies can hopefully help someone else someday. That is what will make it all work it. Jami Dunkin, Iowa
Thank you so much for all you & Steve have done & continue to do for MPGN2/DDD.
Thank you,
Claudette
Hi my name is Angela and I am a 29 year old mother of 2. For as long back as I can remember from being a teenager to a young adult, I have always had lower extremity edema, proteinuria and hematuria. But none of any of the doctors who I had seen in the past had ever pursued any sort of testing to find out what exactly was causing this. They just tried to treat the edema.
It wasn’t until May of 2007 my current physician noticed that it was a continuous amount of high protein and decided to refer me to a nephrologist who then decided to go ahead with the kidney biopsy.
And to my surprise, I find out I have this very rare form of kidney disease called Membranoproliferative Glomerulonephritis type II, which we know as DDD. Being a mother of two and not knowing anything about this rare disease I am panic struck and at a loss of words, not knowing what to do but cry as being afraid of the unknown.
It has been a little over a year now since I have been diagnosed and my symptoms are still the same as always. I have been to see another nephrologist at UCSD Medical Center in San Diego to find out a little more information on this disease but I feel that the most information I have found out about this disease is through websites on the internet and through wonderful people like Lynne Lanning and Richard Smith.
I know that being diagnosed as an adult, my predicted outcome on this disease looks a little better, but it is still very scary to go through this and to not really know much about this disease. I do continue to see my nephrologist every 3 months with routine blood screening to monitor my kidney function and continue to take my medication, which consists only of a diuretic and an ace inhibitor. Currently my kidney function is stable and doing good.
I fully support any family that is going through this and am open to comments from others who have any advise or new information on this disease.
Take care, Angela Mayer
My name is Fabrizio and I'm the father of an Italian boy, aged 11 right now, who is affected by Dense Deposits Disease.
My son Lorenzo, when was 7 years old, presented recurrent macroscopic hematuria with low C3 levels and persistent urinary abnormalities. He presented macroscopic hematuria three times during the first year and only after a kidney biopsy we discovered that he had DDD. At the beginning, since we didn't know anything about this illness, we consulted many, many doctors hoping to find someone who knew how to cure this disease: we consulted doctors (directly or through the phone) in many countries all around the world (in Italy, Switzerland, UK, France, Germany, USA, Israel, Japan), but we didn't find any solution. Only later we were so lucky to find Richard Smith and Lynne Lanning. They are really wonderful people, very competent, very accessible and very friendly, and they gave us the hope to find a solution some day in the future. We met two times, the first one in Iowa in the US, the second one here in Italy. They were so kind to come to Europe in order to make sinergies between the American researches and the European ones. Richard is far ahead all the others, because he is a father (and no one in the world is so highly motivated to solve this illness as he is) and he is the only one who is completely dedicated to DDD. There are some (not many) centers here in Europe which research on rare diseases and are valid, but they are not dedicated only to DDD as Kidneeds and Richard are.
Lorenzo has also partial lypodistrophy and he is very thin, but we actually are not treating him with any medicine (and we never treated him): we are only monitoring his situation through urine exams (proteinuria, creatininuria, microalbuminuria) and blood exams.
At the moment his proteinuria is not so high and, even if he's weaker than the other boys and sometimes he's tired, he is quite stable and doing good.
We also tested Lorenzo's DNA, but we didn't find anything wrong.
I'm available to provide to everyone who is interested any additional information.
I close this story with the hope that Richard's and Kidneeds' researches will lead all of us sooner or later to a solution!
Ciao a tutti, Fabrizio Spoleti
Hi, My name is Julie Gibbs and I am the mother of Alex, who has DDD. Alex was diagnosed in September last year at rhe age of four. He found it a very trying experience being in hospital for about three weeks and undergiong lots of invasive procedures. It was difficult for us all to see the state he was in as he continued to lose weight and refused to eat. Luckily we got a diagnosis relatively quickly and once the correct treatment was started he responded well and gradually returned to his usual sunny self. Alex remained well for about five months and then suffered a relapse which involved lots more hospital visits and increased levels of medicines. He is now stable once more and leading a relatively normal existance. Finding the Kidneeds website was wonderful. The support from Lynne has been incredible and just knowing that other people are going through the same as us, or have been there in the past, helps. The work done by Kidneeds to further research into DDD is brilliant and I am delighted to be able to support this fund raiser. Thank you Steve for the great challenge you are undertaking to help all the DDD families.
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