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Undiagnosed Symptoms Community
This patient support community is for discussions relating to undiagnosed symptoms, breathing difficulties, feeling cold, cough, diarrhea, dizziness, fainting, fever, indigestion, itching, nausea, numbness, pain (chronic), paralysis, rash, sweating, swelling, urination problems, and vomiting.
Help with juvenile onset ALS symptoms - paralysis and breathing difficulties
by sk123, Jul 16, 2008 04:46PM
Today I found out that one of the professors at my alma mater has a daughter, Jenny, who is battling for her life right now. After reading her blog (http://jenjensfamily.blogspot.com), I thought I would post her family's plea here in the hope that someone would come forward with information that may be of help.
Here is a message from her family:
"Jenny, a 14-year old girl, was stricken suddenly with a debilitating illness a little over one year ago.
If you click through to the blog (http://jenjensfamily.blogspot.com/), you’ll see that some doctors suspect she has a rare form of ALS. There is also a possible link to the HPV vaccine, given that her third Gardasil injection occurred not long before her family began noticing the first symptoms of her illness, but doctors are not sure whether Gardasil played any role in Jenny’s illness.
We are desperately looking for two things:
1) Other cases that might be comparable to Jenny’s. Please read the sidebar in blue (“Am I a Comparable?” http://jenjensfamily.blogspot.com/) or read the section on Comparables below. Do you know of anyone who might fit the description?
2) Any doctors you know who might have come across cases like Jenny’s in their practice. Can you help get the word to doctors around the world?
The cause of Jenny’s illness remains a medical mystery. Finding relevant comparables – fast – could help to solve that mystery and thus provide a crucial clue to finding the treatment that could save Jenny’s life.
Time is of the essence because Jenny is now a quadriplegic and is losing the struggle to breathe. Therefore, Jenny’s family appeals to you to bring any potential comparables to their notice by sending an e-mail to jenjensfamily @ gmail.com."
Am I a Comparable?
The desperate need is to identify any “strong comparables” to Jenny’s case, where a comparable is defined as someone:
(1) who has experienced rapidly progressive weakening and loss of the use of his/her limbs,
(2) for whom the onset of the condition began before adulthood, and
(3) for whom treatments such as immunoglobulin (IVIG), plasmapheresis, steroids and immunosuppressants such as Cytoxan have failed to halt the progression of disease. The comparable would be even stronger if
(4) the individual were female rather than male (apparently, neurodegenerative diseases such as juvenile-onset ALS are much less common in females, which is part of what makes the nature of Jenny’s disease so mysterious). And, it would certainly be of interest if
(5) the potential comparable had received the Gardasil vaccine (or perhaps some other vaccine with key similarities, such as an aluminum adjuvant) prior to the onset of symptoms.
(6) It would also be of interest if the patient had both muscle weakness and pityriasis lichenoides (a rare skin condition thought to be auto-immune in nature). But, the family would like to hear about
(7) Anyone diagnosed with juvenile-onset ALS or motor neuron disease, especially females with rapidly progressive weakening.
It is not necessary for a potential comparable to have each and every one of these attributes. But, when communicating about a possible comparable patient, please let us know which attributes that patient has in common with Jenny and any other potentially relevant information about the patient’s case history, family medical history, etc. Contact information for a physician familiar with the patient’s case would be especially helpful.
Send comparable info to jenjensfamily @ gmail.com
Here is a message from her family:
"Jenny, a 14-year old girl, was stricken suddenly with a debilitating illness a little over one year ago.
If you click through to the blog (http://jenjensfamily.blogspot.com/), you’ll see that some doctors suspect she has a rare form of ALS. There is also a possible link to the HPV vaccine, given that her third Gardasil injection occurred not long before her family began noticing the first symptoms of her illness, but doctors are not sure whether Gardasil played any role in Jenny’s illness.
We are desperately looking for two things:
1) Other cases that might be comparable to Jenny’s. Please read the sidebar in blue (“Am I a Comparable?” http://jenjensfamily.blogspot.com/) or read the section on Comparables below. Do you know of anyone who might fit the description?
2) Any doctors you know who might have come across cases like Jenny’s in their practice. Can you help get the word to doctors around the world?
The cause of Jenny’s illness remains a medical mystery. Finding relevant comparables – fast – could help to solve that mystery and thus provide a crucial clue to finding the treatment that could save Jenny’s life.
Time is of the essence because Jenny is now a quadriplegic and is losing the struggle to breathe. Therefore, Jenny’s family appeals to you to bring any potential comparables to their notice by sending an e-mail to jenjensfamily @ gmail.com."
Am I a Comparable?
The desperate need is to identify any “strong comparables” to Jenny’s case, where a comparable is defined as someone:
(1) who has experienced rapidly progressive weakening and loss of the use of his/her limbs,
(2) for whom the onset of the condition began before adulthood, and
(3) for whom treatments such as immunoglobulin (IVIG), plasmapheresis, steroids and immunosuppressants such as Cytoxan have failed to halt the progression of disease. The comparable would be even stronger if
(4) the individual were female rather than male (apparently, neurodegenerative diseases such as juvenile-onset ALS are much less common in females, which is part of what makes the nature of Jenny’s disease so mysterious). And, it would certainly be of interest if
(5) the potential comparable had received the Gardasil vaccine (or perhaps some other vaccine with key similarities, such as an aluminum adjuvant) prior to the onset of symptoms.
(6) It would also be of interest if the patient had both muscle weakness and pityriasis lichenoides (a rare skin condition thought to be auto-immune in nature). But, the family would like to hear about
(7) Anyone diagnosed with juvenile-onset ALS or motor neuron disease, especially females with rapidly progressive weakening.
It is not necessary for a potential comparable to have each and every one of these attributes. But, when communicating about a possible comparable patient, please let us know which attributes that patient has in common with Jenny and any other potentially relevant information about the patient’s case history, family medical history, etc. Contact information for a physician familiar with the patient’s case would be especially helpful.
Send comparable info to jenjensfamily @ gmail.com
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