Post by malory on Mar 1, 2019 16:09:41 GMT
Owl put this link on RareC www.rcgp.org.uk/about-us/the-college/who-we-are/our-people/leadership-team.aspx for us to contact RCGP.
The RCGP are mainly about educating GPs (shape the future of General Practice, ensure GP education meets the changing needs of UK primary care) and they have responded positively to us in the past, allowing us to publish an article about TMAU in their Innovait journal (2012). It's a good time to contact them again to raise awareness. They may be able to get us to be taken more seriously by the powers that be.
WHO TO CONTACT:
Professor Helen Stokes-Lampard, Chair of RCGP Council
Professor Mayur Lakhani, RCGP President
circ@rcgp.org.uk
postgraduatetraining@rcgp.org.uk
WHAT TO SAY: anything to capture interest. A video could enhance your words. I will send the link to Jason's animated film. I really like it. You can also add Reece's petition (link below)
I sent something like this:
Many thanks in advance for taking the time to read my letter about metabolic body and breath odours such as Trimethylaminuria. Our community are having difficulty conveying the importance of these disorders to medical institutions.
These disorders are disabling, but people do not treat us as having a disability. Compassion is usually shown to those with a disability. We are treated as social pariahs, however.
Some Brief Information
Trimethylaminuria (TMAU) is only one of a number of metabolic body and breath malodour conditions and represents the tip of an iceberg. It is highly under-diagnosed (poorly recognised/misunderstood by health professionals and also inadequately tested for). TMAU is not a totally new disease, but, like autism, it has become more prevalent in modern society. The body’s inability to neutralise malodorous gaseous compounds, such as trimethylamine, is absolutely not a hygiene issue. Moreover, malodorous chemicals are actually worsened by the use of perfumes. The smelly gases emitted from the body and bodily fluids, which include fecal, rotten egg, rotten fish and ammonia smells, are overwhelming and repellent, causing nausea and allergic-type reactions in many people.
Treatment
The (TMAU) treatment protocol (dietary choline restriction, rotations of antibiotics, B2 supplementation, chlorophyll, activated charcoal) is ineffective for many of us, and it is this large group of people I’m focusing on. Those who can control their odours to some degree usually fight to lead normal lives and forget about the disorder. However, even in the cases where choline restriction has successful results, the repercussions are dangerous; choline is a vital nutrient and deficiency leads to health implications, including fatty liver and permanent nerve damage. There is, therefore, no acceptable form of treatment for the disorder.
Psychological Impact
Malodour disorder impacts negatively on every aspect of the sufferer’s life, and this impact is much more severe in children and teenagers. It impedes normal social interactions, work and school relationships, intimate relationships (devastating for teenagers!) and generally taints the sufferer’s personality development, causing anger, frustration and despair. In 2016, on behalf of a scientist, I carried out audio interviews of a small sample of our UK community and discovered that over 90% of the people interviewed had actually attempted suicide or, at least, seriously considered it. The dangers of living with malodour disorder are very real, but nobody seems to take our condition seriously or be able to empathise with us. It is only the resourcefulness of some community members, who have created forums, advocacy groups and online support networks, which empowers us to survive the hostility we face daily.
Economic Implications for Society
As people’s educational achievements and career paths are negatively affected by this disorder, the economic implications are obvious. Many of us are unemployed or under-employed as a result of it. Students struggle to finish education and are discriminated against in the workplace even when they do finish their studies.
Inappropriate treatments and misplaced diagnostic investigations for patients complaining of bad odour are costly to the NHS. A proper cure would be more cost effective.
Counselling of malodour patients is costly.
Sufferers’ dependence on benefits is costly.
What We Need:
Heightened awareness of these conditions amongst GPs to avoid misdiagnoses, inappropriate referrals or rebuffals.
A better test to diagnose these malodour disorders and the option to access it directly.
A panel of medical experts to discuss our issues with us, including devising an action plan which focuses on finding potential solutions.
Transparency: Sheffield Children's Hospital need to publish the statistics for the TMAU tests they carry out.
Please let me know if you can help our community in any way. There are several members of our community who would be happy to meet with a panel of your members to discuss how to raise awareness of these conditions amongst GPs.
video link:
www.youtube.com/watch?v=FKa3cvdzXiY&feature=youtu.be
petition.parliament.uk/petitions/231927
The RCGP are mainly about educating GPs (shape the future of General Practice, ensure GP education meets the changing needs of UK primary care) and they have responded positively to us in the past, allowing us to publish an article about TMAU in their Innovait journal (2012). It's a good time to contact them again to raise awareness. They may be able to get us to be taken more seriously by the powers that be.
WHO TO CONTACT:
Professor Helen Stokes-Lampard, Chair of RCGP Council
Professor Mayur Lakhani, RCGP President
circ@rcgp.org.uk
postgraduatetraining@rcgp.org.uk
WHAT TO SAY: anything to capture interest. A video could enhance your words. I will send the link to Jason's animated film. I really like it. You can also add Reece's petition (link below)
I sent something like this:
Many thanks in advance for taking the time to read my letter about metabolic body and breath odours such as Trimethylaminuria. Our community are having difficulty conveying the importance of these disorders to medical institutions.
These disorders are disabling, but people do not treat us as having a disability. Compassion is usually shown to those with a disability. We are treated as social pariahs, however.
Some Brief Information
Trimethylaminuria (TMAU) is only one of a number of metabolic body and breath malodour conditions and represents the tip of an iceberg. It is highly under-diagnosed (poorly recognised/misunderstood by health professionals and also inadequately tested for). TMAU is not a totally new disease, but, like autism, it has become more prevalent in modern society. The body’s inability to neutralise malodorous gaseous compounds, such as trimethylamine, is absolutely not a hygiene issue. Moreover, malodorous chemicals are actually worsened by the use of perfumes. The smelly gases emitted from the body and bodily fluids, which include fecal, rotten egg, rotten fish and ammonia smells, are overwhelming and repellent, causing nausea and allergic-type reactions in many people.
Treatment
The (TMAU) treatment protocol (dietary choline restriction, rotations of antibiotics, B2 supplementation, chlorophyll, activated charcoal) is ineffective for many of us, and it is this large group of people I’m focusing on. Those who can control their odours to some degree usually fight to lead normal lives and forget about the disorder. However, even in the cases where choline restriction has successful results, the repercussions are dangerous; choline is a vital nutrient and deficiency leads to health implications, including fatty liver and permanent nerve damage. There is, therefore, no acceptable form of treatment for the disorder.
Psychological Impact
Malodour disorder impacts negatively on every aspect of the sufferer’s life, and this impact is much more severe in children and teenagers. It impedes normal social interactions, work and school relationships, intimate relationships (devastating for teenagers!) and generally taints the sufferer’s personality development, causing anger, frustration and despair. In 2016, on behalf of a scientist, I carried out audio interviews of a small sample of our UK community and discovered that over 90% of the people interviewed had actually attempted suicide or, at least, seriously considered it. The dangers of living with malodour disorder are very real, but nobody seems to take our condition seriously or be able to empathise with us. It is only the resourcefulness of some community members, who have created forums, advocacy groups and online support networks, which empowers us to survive the hostility we face daily.
Economic Implications for Society
As people’s educational achievements and career paths are negatively affected by this disorder, the economic implications are obvious. Many of us are unemployed or under-employed as a result of it. Students struggle to finish education and are discriminated against in the workplace even when they do finish their studies.
Inappropriate treatments and misplaced diagnostic investigations for patients complaining of bad odour are costly to the NHS. A proper cure would be more cost effective.
Counselling of malodour patients is costly.
Sufferers’ dependence on benefits is costly.
What We Need:
Heightened awareness of these conditions amongst GPs to avoid misdiagnoses, inappropriate referrals or rebuffals.
A better test to diagnose these malodour disorders and the option to access it directly.
A panel of medical experts to discuss our issues with us, including devising an action plan which focuses on finding potential solutions.
Transparency: Sheffield Children's Hospital need to publish the statistics for the TMAU tests they carry out.
Please let me know if you can help our community in any way. There are several members of our community who would be happy to meet with a panel of your members to discuss how to raise awareness of these conditions amongst GPs.
video link:
www.youtube.com/watch?v=FKa3cvdzXiY&feature=youtu.be
petition.parliament.uk/petitions/231927