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Hard cases: Investigating rare & tough diseases

May 20, 2012 4:00 PM

Dr. William Gahl is one of the last, best hopes for people suffering from rare, debilitating, and undiagnosed medical conditions. Lara Logan reports.

Hard cases: Investigating rare & tough diseases

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by mik1201 August 26, 2012 12:33 AM EDT
My granddaughter has a similar condition to the child in your segment. She began having seizure within 24 hours after birth. She is now 9 and still not speaking, not walking, and still having some seizure activity on EMGs. Please give me information on how to seek help through the program with Dr. Gahl or perhaps at Duke University as mentioned also as I am sure that the program with Dr. Gahl is very difficult to qualify for. Our little Ella is the joy of our lives. She is our little angel. We just have no idea what to do to help her. She has been in PT/OT at University Medical Center, Jackson, MS since birth. We are so thankful to them for all their help. We have been praying earnestly to hear of any other children who share this rare condition.
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by b525143-null-291 July 6, 2012 1:36 AM EDT
Bravo! It is great to see a common sense doctor and focused a process used to investigate and service the ill. This streamlined program could be duplicated in centers across the USA by "rethinking" the way we currently handle illnesses and implementing systems such as this that actually work.
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by Gogi0418 May 31, 2012 3:12 PM EDT
My grandson has a rare seizure disorder resembling Bryce Benson, we know of 40 cases worldwide, he began seizing within the first 24 hours of his precious life, has been to Johns Hopkins & many other specialists, many days he has dozens or hundreds of seizures. It would be interesting to compare notes.
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by cbs_bull May 25, 2012 5:22 AM EDT
The congress should give this doctor more money. They have wasted billions on many useless things. This doctor should be a national hero.
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by RoseLeslie May 22, 2012 3:46 PM EDT
I was just accepted into this program after 13 years of struggling with constant infections. I spent years trying to get into this program but just got my phone call a few weeks ago. I can honestly say that for someone like us, who have no hope, that phone call changes your life.
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by rein4cer4 May 21, 2012 11:25 AM EDT
My son is a patient of another team at the NIH. While staying at the Children's Inn, I met a family whose child is in the undiagnosed group at the NIH. How scary. We were lucky enough to get a diagnosis quickly locally and now travel to the NIH on a regular basis to meet with his team. I thank our lucky stars for their research.
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by CIPROISPOISON May 21, 2012 9:48 AM EDT
I'd be very interested in knowing whether Matthew Parker, the young ex-tennis player, ever took a quinolone antibiotic in the weeks/months prior to developing his body-wide disabling joint pains?? Quinolone antibiotics = Cipro, Levaquin, Avelox and a few others (most have been yanked from the market for their horrific and often permanent side effects). I myself was a very active and healthy person prior to ingesting just TWELVE 500mg Ciprofloxacin pills prescribed to me by my doctor for a simple UTI. That was nearly three years ago now, and I have been essentially bedridden and unable to walk ever since with devastating injuries to literally every joint and tendon in my entire body (including my jaw, as Matthew described). I was just 30 years old when the criminals at Bayer and our corrupt FDA ended my life. You, the taxpayer, now pay my bills, as I am on disability--and likely will be for the rest of my hellish existence on this planet. I am in pain 24/7/365 and have lost absolutely EVERYTHING as a result of this never-ending nightmare. And the worst part is, the very medical community that did this to me now turns its back and denies that these drugs harm people like this!!! Doctors are sure quick to prescribe these nasty antibiotics for every little sniffle and cough, but once you're crippled by them they're of NO help! Meanwhile thousands of desperate victims convene online trying to figure out *** has been done to our bodies by these horrific poisons marketed to the unsuspecting public as medicines. CRIMINAL!!!
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by dlweiler May 21, 2012 8:47 AM EDT
I watched the rare disease segment last night and I'm writing about Bryce Bennet. My grandson has a rare disease (less than 100) in the US called AHC (Alternating Hemiplegia of Children). I'm wondering if Bryce might have the same thing, the segment didn't tell much about him. With AHC seizures are developed within the first year of life leaving one side or the other of their body paralyzed for hours, days or weeks, alternating from one side of their body to the other and sometimes the whole body. These kids are usually 3 to 5 years before they walk and development is slow. No cure yet but research is being done by the University of Utah and Duke University. If Bryce has any of these systems please advise his parents. All of these kids have a difference in severity.
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by madisonmeadows May 20, 2012 11:01 PM EDT
First, thank you so much for this story ....priceless for people with rare diseases without the research funding. I am so impressed with this team and their commitment. Dr. Gahl is so correct with the strength these people have under the circumstances. I have a rare disease polymyositis and interstitial lung disease that sounded like Christine's symptoms. I went to John Hopkins and was so blessed to be able to go.

Thank you again for airing this story and I pray more monies will be contributed to help this very important endeavor.
Ann H.
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by SallyHP May 20, 2012 10:17 PM EDT
I am wondering why Sally's diagnosis was not revealed. There was another program, AC 360, I think, where a patient had the same symptoms and Dr. Sanjay Guptah said it turned out to be amyloidosis. She was then sent to the Mayo Clinic where she underwent a stem cell transplant. I think it would be a public service on 60 Minutes'part to mention the name of the disease, as it might shorten the time from initial presentation to diagnosis and treatment for other patients and their doctors.
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