My Name Is Heather Long and my son died at the age of 5 from an undiagnosed disease. On May 21, Congressman Carter proposed legislation on my request, that if passed, would create a National Undiagnosed Diseases Registry. The Bill is Named HR 2538: The Charles August 'Cal' Long Undiagnosed Diseases Registry Act of 2009, in honor of my son.
This Registry will serve all men, women, and children suffering with an undiagnosed disease by putting their information in one central location where it can be accessed by doctors and researchers. This registry would provide doctors and researchers with a means to seek out and find similar cases to the one(s) they are treating. It will also facilitate statistical and epidemiological studies into the area of undiagnosed diseases.
If you are interested in seeing this bill succeed, I urge you to contact me. You can even look this bill up on the internet. I am legitimate and so are my efforts to help others who are suffering like my son.
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Undiagnosed - Prop. Legislation: H.R.:2538 .. Undiagnosed Diseases Registry
- By turtle102301
- Posted June 5, 2009 at 3:16 pm · 10 replies
- In Getting a diagnosis
- Shared with the public
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- By SickOfBeingSick
- Posted June 6, 2009 at 5:47 am
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I would love to support this legislation. Please keep us updated, let me know where I can join a list for e-mail updates, or what I can do to support this.
What a wonderful way to honor your son.
Thx,
Cathy
- By turtle102301
- Posted June 8, 2009 at 11:58 am
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Hi Cathy,
Thank you for your support. You can support this proposed legislation by contacting your U.S. Representative and telling them that you support the Bill. Give them the bill number and name.
Heather
- By StacyM
- Posted June 10, 2009 at 8:27 pm
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Hi Heather...I would love to support this bill...just tell me what I need to do. My son died at the age of two and a half and it wasn't until about a month before he died that I happen to come across an article that featured siblings with his symptoms....so I know what its like to not have a diagnosis. Even after I found the article there was nothing we could do and some doctors still were convinced he had a mitochondrial disease (even though all tests were negative). Anyway, I would be interested in knowing what your sons symptoms were. My son, Spencer was only the 4th case of a very rare disease called Levy-Yeboa Syndrome and it wasn't until after he died that I actually got the doctor who treats the other 3 children to publish his findings so the disease could actually have a name! Up until that point no one even knew it exsisted. It would be so great for there to be a central location where all undiagnosed syndromes could be placed, because while my son was sick the doctors and my husband and I were frantically searching for any syndromes that matched his symptoms - and no one really knew where to look. This is such a great idea - I'm sure your son is so proud! Talk to you soon..Stacy
- By turtle102301
- Posted June 10, 2009 at 9:36 pm
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Hi Stacy,
Cal seemed fine at birth. Except that he didn't want to nurse right a way and he was not very active. He also had some congenital heart defects, a PFO and a couple small VSDs that spontaneously closed by the time he was 8 months old. After he did finally nurse, he had diarrhea. All of this was attributed to the fact that he was only 37 1/2 weeks GA and delivered via cesarean.
He had his first upper resp. infection at 2 wks of age and then suffered from chronic resp. issues up until his death. He always had a lot of mucus and would gag and choke on it. He also had a ravenous appetite, but still failed to gain weight.
He showed progressive cerebral atrophy on MRI's without any focal abnormalities. He suffered several bone fractures in his legs just from falling. The worst was a broken femur the year before he died.
He started vomiting when he was 3 and the docs. could not tell me why. They told me it was due to constipation and acid reflux. He did have issues with constipation, but they never proved the reflux.
I insisted on a G-Tube when he was 4 because he was so thin and emaciated. Three months later, he started having having seizures.
Numerous DNA and other testing was done and all results came back normal, negative etc.
This Registry will help so many people who do not have a diagnosis and your support is greatly appreciated. If this legislation is successful, then all the suffering Cal went through will have not been for nothing. I urge you to call your U.S. Rep. in support of the bill and tell as many of your family and friends to do the same.
Heather
- By MelissaForgetMeNot
- Posted June 23, 2009 at 10:35 am
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Heather,
I am SO sorry to hear about what happened with your son. I would love to be able to support this legislation. As I am typing this I am sitting at the airport waiting to fly to Washington DC to talk to Congress about different issues in healthcare. Feel free to email me with any information. Where is Congressman Carter from? I will also contact my Congressman about it. My email address is forgetmenotnebraska@yahoo.com
Melissa
- By BravesLover
- Posted June 23, 2009 at 11:20 am
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I would love to support your bill. I will email my congressmen as soon as I type this. I suffer from stiff person syndrome and it took me two years to get a diagnosis since it is so rare. I feel for you in having a child go through what yours did. I'm an adult and I know how difficult it is for me. There is no cure for what I have just treatment. There is a day called National Rare Disease Day and it is celebrated on Feb.28th. It was first celebrated in the UK and a friend of mine emailed me and asked me to contact my governor and see if he would proclaim it in OK. I sent him a letter and emailed him and in a few weeks he sent me a beautiful certificate where the deemed Feb.28th as Rare Disease Day in the state of OK. I don't know if your state recognizes this day or not but if it doesn't please write to your governor and see if he will proclaim it in your state. There are several states that already do but if we could get all of them it would be great. Thank you,Tina Morrow my email is tinam_328@hotmail. com. You can talk to me anytime you want to.
- By rosesfree0fpain
- Posted July 7, 2009 at 3:40 pm
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Hi
I applaud your efforts. I have suffered 26 yrs. with a mysterious illness only getting worse with no dx. I hope the bill passes with flying colors.
- By papdo
- Posted July 8, 2009 at 5:51 pm
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I wrote my congresswoman just now asking her to support this bill...
Robert
- By turtle102301
- Posted July 8, 2009 at 8:28 pm
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Hi Robert,
Thank you for supporting this bill.
Heather
- By WhataBreeze
- Posted October 4, 2009 at 12:27 am
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So pleased to take the time reading what has assisted you in your personal advances that has become a possible blessing to others who also has reason to fill their own needs and as a "Team" do a deed that will be a possitive for all.
J. M. Amitin, aka: WhataBreeze, Founder of the Central Pontine Myelinolysis Awareness Foundation.
G-d Bless... Breeze & Franky (Boston Terrier "Neuro Service Companion - 5 year old full bred male at 45 lbs. quite a big boy ")
There is a good reason to " communicate, so why no try.
cpm_awareness@yahoo.com
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