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Would anyone be interested in a survey?

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10 years 10 months ago #49292 by Rogerm
Would anyone be interested in a survey? was created by Rogerm
I got diagnosed with ITP in mid March of this year. What has surprised me is how little is known about the cause(s) of ITP. I was wondering if anyone would be interested in helping me to come up with an in depth survey of lifestyle, previous illnesses, etc. in an attempt to come up with a potential cause of ITP.

My first thoughts cover what I think would be good to know, sex, age, weight, height, diet history, previous illnesses, current illnesses (other than ITP), vaccinations, travel history, residence history, chemical exposures, sexual preference, sexual activity, insect bites in previous six months, parasites, employment history, family history of ITP or similar. Obviously it would be a blind survey with no names.

What else?

I thought that if we could cross tabulate answers it may throw out some more similarities that could be further investigated. I maybe wasting my time, but I'd like to do something that can throw light on a cause, rather than its just bad luck.

The results could be published here (I hope) for everyone to see and interpret. Can the website cope with an online survey and how could we get worldwide attention for a survey seeing as ITP is a very rare disease and may go undiagnosed in many countries.

My apologies if this has been done before, but I could not find anything in the search function.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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10 years 10 months ago #49295 by Sandi
Replied by Sandi on topic Would anyone be interested in a survey?
You can ask questions and I'm sure people will answer. I can tell you though that I've been researching ITP since 1997 and the 'cause' is different for all of us. ITP is generally due to a genetic predisposition and something happens that triggers it, such as an illness, a medication or supplement, stress, etc. It varies. Sometimes there is no known incident. Most autoimmune disorders are like that. If a parent or grandparent has an autoimmune disorder, your chances of acquiring one or more is greater, and it may not be the same one.

This is probably the best explanation/theory I've seen over the years:

Microbial Trigger Theory
This theory was explored in Science News in the article "Microbial Trigger for Autoimmunity?" Lymphocytes exist in the body that are autoreactive, yet remain inactive. Researchers found that in mice, these dormant cells can become activated if the cells are near a bacterial infection. When the body fights the bacterial infection and interleukin-12 is created, the interleukin-12 creates an array of additional compounds specific to the pathogen. These anti-microbial compounds released near the infection site could accidentally activate a dormant, self-reactive lymphocyte. If the dormant lymphocyte targets platelets, then the microbial invasion may have triggered autoimmunity against platelets.

DNA Damage Theory
According to this theory, autoimmune diseases are developed due to a genetic defect that arises in a key part of the immune system.

There are many complex processes involved with avoiding autoimmunity. According to clonal deletion, T cells that react to self-molecules in the thymus are eliminated. If the presentation of self-antigen and subsequent elimination of autoreactive T cells does not proceed perfectly, a self-reactive T cell could mature, and an autoimmune disease could develop. Autoreactive T cells that are not eliminated in the thymus can be suppressed through other mechanisms. However, when those suppression mechanisms break down, an autoimmune disease can develop.

If a process becomes altered because of a genetic defect, then there is increased risk of the development of an autoimmune disease. The genetic defect could be due to free radical damage or through other causes of somatic genetic mutation. The defect could also be genetic, as a small nucleotide polymorphism in one or both alleles could make an individual more susceptible to acquiring an autoimmune disease.

Indeed, there is evidence that some individuals are genetically more prone to autoimmune diseases than others. A twins study was conducted for several autoimmune diseases, including multiple sclerosis, rheumatoid arthritis, and IDDM. Monozygotic twins were compared with dizygotic twins. For each disease, the monozygotic twins showed disease concordance 20% of the time, compared with only 5% for dizygotic twins. In particular, it is thought that the MHC genotype is particularly important.

Molecular Mimicry Theory
According to this theory, autoimmune diseases are caused when pathogens are detected in the body that are similar to self-molecules. Lymphocytes are activated to target the intended antigen, but as they attack the pathogen, they also attack the similar self-molecules. 30 By itself, it is unlikely that this theory explains the onset of an autoimmune disease. However, molecular mimicry may be an important factor when combined with either the Microbial Trigger Theory or DNA Damage Theory.

Autoimmunity often occurs spontaneously in patients, and science does not know what events trigger the onset of the disease. It is likely that autoimmune diseases arise from a confluence of factors. For example, in one experiment, it was shown that it is possible to induce an autoimmune disease through a combination of the three theories above. Genetically susceptible strains of animals (DNA damage) were injected with “self” tissues (Molecular Mimicry) mixed with strong adjuvants containing bacteria (Microbial Trigger). The combination of those events provoked autoimmunity.

www.samizdat.com/itp.html

In my case, ITP was the first symptom of Lupus. I had ITP for 8 or 9 years before Lupus symptoms began and blood work confirmed the diagnosis. There was no way I could have known that at ITP diagnosis though, so trying to figure out what caused it would have been impossible since the reason was not yet apparent.
The following user(s) said Thank You: Taz

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  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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10 years 10 months ago #49329 by mrsb04
Replied by mrsb04 on topic Would anyone be interested in a survey?
Mine was following viral sinusitis..immune system forgot to switch off the antibodies that fought the virus so they started to attack my platelets instead

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10 years 10 months ago #49330 by Taz
Replied by Taz on topic Would anyone be interested in a survey?
Rogerm,
I think it's a great idea to have some sort of survey like that. I'm still pretty new to ITP, but have wanted many times to know more about other ITPers..to know if my experiences were like others. While I don't think it's likely to find an actual cause, it would at least be very interesting to see the similarities with everyone. While I love my hematologist and think he did get a good amount of my medical history, I think I would feel even better if he dug a little deeper. Maybe a detailed survey could do just that.

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10 years 10 months ago #49331 by rhoda
Replied by rhoda on topic Would anyone be interested in a survey?
sure.
i'd participate.

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  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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10 years 10 months ago #49333 by amberyard
Replied by amberyard on topic Would anyone be interested in a survey?
Stress and celexa induced here

But yea I'll be more than happy to participate

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10 years 10 months ago #49501 by Winnifred
Replied by Winnifred on topic Would anyone be interested in a survey?
Mine appeared out of the blue! I would be willing to participate!

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  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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10 years 10 months ago #49515 by mrsb04
Replied by mrsb04 on topic Would anyone be interested in a survey?
Count me in

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10 years 10 months ago #49543 by Rogerm
Replied by Rogerm on topic Would anyone be interested in a survey?
OK I will try to come up with one of those online surveys with Yes/No/Why Not type of answers and the ability to expand on answers. Now the hard part what questions would you feel comfortable with?
Asking about all aspects of lifestyle is quite daunting, let alone answering those questions honestly/openly.

The free survey sites are public access, so no names obviously, not even email addresses imho.

Give me a list of questions that you'd find acceptable - BUT it maybe the unacceptable questions that give us a greater insight!!!

My thoughts so far
Sex
Age
Ethnic origins, self, parents, grandparents
Country of residence, area of residence

Childhood history (upto 16)
Childhood illnesses - list of common diseases with tick boxes - broad brush as far as possible
Childhood vaccinations - list of vaccinations by disease (not by name as this can change)
Method of vaccination - oral, needle, shared needle, pressure
Travel locations - use International country codes eg USA, GB, FR, D, AUS, OST etc.
Use of alcohol
Use of drugs
Smoking

Adolescent history (16 to 20) (repeat the above tick box questions)
Illnesses
Vaccinations
Method of vaccination - oral, needle, shared needle, pressure
Sexual activity?? should we and what should we ask?
Sexual diseases
Travel locations
Use of alcohol
Use of drugs
Smoking

Young Adult History (20 to 40)
Illnesses
Vaccinations
Method of vaccination - oral, needle, shared needle, pressure
Sexual activity
Sexual diseases
Onset of menopause
Use of alcohol
Use of drugs
Smoking

Middle aged adult (40 to 60)
Illnesses
Vaccinations
Method of vaccination - oral, needle, shared needle, pressure
Sexual activity
Sexual diseases
Onset of menopause
Use of alcohol
Use of drugs
Smoking

Later age adult (over 60)
Illnesses
Vaccinations
Method of vaccination - oral, needle, shared needle, pressure
Sexual activity
Sexual diseases
Use of alcohol
Use of drugs
Smoking

Employment history by industry types.
Chemical exposure/risks dates and length of exposure if known or suspected.
Diet lifestyle - eg vego, carnivore, vegan, others? approx. dates when started/finished
Use of prescription and over the counter drugs.
Family history of platelet disorders/blood disorders.
History of childbirth

WHAT ELSE?

Getting the message out to other forums (forii???).

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  • Melinda
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10 years 10 months ago #49545 by Melinda
Replied by Melinda on topic Would anyone be interested in a survey?
I don't see allergies

Also for questions you feel maybe some may not want to answer give the option of ticking a box that says Prefer Not To Answer or No Reply

Also give the option of ticking a box that says Do Not Know

'History of childbirth' - is that for a female to list pregnancies/miscarriages or is that what one knows of their birth?

What about where a person has lived before ITP - not just present country/location

(my opinion - unless someone has ITP secondary to another disease/disorder I feel the onset of it is due to something recent in their life)

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10 years 10 months ago #49553 by Rogerm
Replied by Rogerm on topic Would anyone be interested in a survey?

Rogerm wrote: Added comments

Unanswered questions are assumed to be not known, please tick "prefer not to say" if that applies
Sex
Age
Ethnic origins, self, parents, grandparents
Country of residence, area of residence - list all known and years of residence from/to

Childhood history (upto 16)
Childhood illnesses - list of common diseases with tick boxes - broad brush as far as possible
Childhood vaccinations - list of vaccinations by disease (not by name as this can change)
Method of vaccination - oral, needle, shared needle, pressure
Travel locations - use International country codes eg USA, GB, FR, D, AUS, OST etc.
Use of alcohol
Use of drugs
Smoking
Allergies

Adolescent history (16 to 20) (repeat the above tick box questions)
Illnesses
Vaccinations
Method of vaccination - oral, needle, shared needle, pressure
Sexual activity?? should we and what should we ask?
Sexual diseases
Travel locations
Use of alcohol
Use of drugs
Smoking
Allergies

Young Adult History (20 to 40)
Illnesses
Vaccinations
Method of vaccination - oral, needle, shared needle, pressure
Sexual activity
Sexual diseases
Onset of menopause
Use of alcohol
Use of drugs
Smoking
Allergies

Middle aged adult (40 to 60)
Illnesses
Vaccinations
Method of vaccination - oral, needle, shared needle, pressure
Sexual activity
Sexual diseases
Onset of menopause
Use of alcohol
Use of drugs
Smoking
Allergies

Later age adult (over 60)
Illnesses
Vaccinations
Method of vaccination - oral, needle, shared needle, pressure
Sexual activity
Sexual diseases
Use of alcohol
Use of drugs
Smoking
Allergies

Employment history by industry types.
Chemical exposure/risks dates and length of exposure if known or suspected.
Diet lifestyle - eg vego, carnivore, vegan, others? approx. dates when started/finished
Use of prescription and over the counter drugs.
Family history of platelet disorders/blood disorders.
History of childbirth/pregnancies - age at giving birth

Lifestyle or Medical Events in the 6 months prior to onset of ITP
Personal crisis (loss of family member, breakup, job loss, financial crisis, mental illness, what else????)
Medical events
Lifestyle activities - narrative
Pets or contact with animals
Suspected events that you have about ITP onset.

WHAT ELSE?

Getting the message out to other forums (forii???).

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  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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10 years 10 months ago #49557 by mrsb04
Replied by mrsb04 on topic Would anyone be interested in a survey?
lifestyle events in preceding years maybe

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10 years 10 months ago #49560 by Rob16
Replied by Rob16 on topic Would anyone be interested in a survey?
Are there questions regarding various treatments tried and responsiveness to them?
Travel to various regions where tick-borne illness can occur (Lymes, etc.)
Other related conditions tested for (antiphospholipid syndrome, SLE, other antibodies, etc.)

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10 years 10 months ago #49569 by Rogerm
Replied by Rogerm on topic Would anyone be interested in a survey?

mrsb04 wrote: lifestyle events in preceding years maybe


How far back would you think appropriate?

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10 years 10 months ago #49570 by Rogerm
Replied by Rogerm on topic Would anyone be interested in a survey?

Rob16 wrote: Are there questions regarding various treatments tried and responsiveness to them?
Travel to various regions where tick-borne illness can occur (Lymes, etc.)
Other related conditions tested for (antiphospholipid syndrome, SLE, other antibodies, etc.)


I will add a section - probably have to be a narrative for treatments rather than tickbox.

I think that tick areas and probably any form of prior parasite infestation/insect bites would be good.

"Other related conditions" - would that be doubling up with illnesses by age sector? or are you thinking of even more specific items that maybe covered by a narrative as well?

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10 years 10 months ago #49584 by Rob16
Replied by Rob16 on topic Would anyone be interested in a survey?
"Other related conditions" - I am thinking more of which tests were run and what were the results.

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  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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10 years 10 months ago #49590 by mrsb04
Replied by mrsb04 on topic Would anyone be interested in a survey?
4 years in my case...not prepared to go into the details at this stage

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