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Plasminogen Deficiency

What is Plasminogen Deficiency ?

Plasminogen Deficiency is a rare blood disorder related to blood clots that typically only causes eye problems.

 

Plasminogen Deficiency is a rare blood disorder related to blood clots that typically only causes eye problems.
Acknowledgement of Plasminogen Deficiency has not been added yet.
1.6http://www.plasminogenregistry.org/
Synonyms for Plasminogen Deficiency has not been added yet.
Cause of Plasminogen Deficiency has not been added yet.
Symptoms for Plasminogen Deficiency has not been added yet.
Diagnosis of Plasminogen Deficiency has not been added yet.
Diagnostic tests of Plasminogen Deficiency has not been added yet
Human Plasminogen and Fresh Frozen Plasma administered topically or systemically.
Prognosis of Plasminogen Deficiency has not been added yet.
Tips or Suggestions of Plasminogen Deficiency has not been added yet.
References of Plasminogen Deficiency has not been added yet.
Plasminogen Dificiency Created by esor36
Last updated 26 Feb 2013, 01:20 PM

Posted by meredith
26 Feb 2013, 01:20 PM

It is my granddaughter, and she is 14 months old. We are trying to learn all we can as well. There is a group on Facebook-put Plasminogen Deficiency in the search and it will pop up. It has about 800 members but there are two women who are very knowledgeable (for as much info as it out there!) and they are great because they both have children with the condition.

Posted by esor36
22 Nov 2011, 12:25 PM

I would love to talk with you I also have a young daughter, she's 4 now but was diagnosed with the the same condition when she was 1 year old. I have been searching for someone to talk with.

plasminogen Deficiency Created by esor36
Last updated 21 Feb 2013, 01:13 AM

Posted by selectgrl46
21 Feb 2013, 01:13 AM

My granddaughter has just been diagosed with plasminogen deficiency and is recovering from a very severe eye infection after spending a week in the hospital. I am concerned and worried and don't know much about this condition. Any advice would be much appreciated.

Posted by esor36
23 Nov 2011, 12:22 PM

There are only a handful of children with this condition. My daughter is the only one we've been able to locate in the US. Info is very hard to come by fortunately the is a doctor at the Cincinnati Childrens Hospital in Ohio who is from Europe and had seen this condition before and was able to diagnose my daughter but only a handful of physicians have ever seen a case of PD. We have learned alot over the last 3 years most of it we've had to research ourselves and we've never found another patient who's parents we could talke with. my email is esor36@hotmail.com we can talk anytime you want

Posted by dondonz
21 Nov 2011, 12:55 PM

hi there my duaghter has just been diagnosed to and we havent been told much info either it wud be grate if we could chat as this is very hard to find people with the same illness plzzz reply thanks

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CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

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Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

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Plasminogen Dificiency

Created by esor36 | Last updated 26 Feb 2013, 01:20 PM

plasminogen Deficiency

Created by esor36 | Last updated 21 Feb 2013, 01:13 AM


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