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Bild zur Petition mit dem Thema: HPU and KPU affected require acknowledgement of the metabolic disorder from healthcare and doctors HPU and KPU affected require acknowledgement of the metabolic disorder from healthcare and doctors
  • Von: Johanna Griesel mehr
  • An: German Minister of Health Hermann Gröhe
  • Region: Deutschland mehr
    Kategorie: Gesundheit mehr
  • Status: Petition in Zeichnung
    Sprache: Englisch
  • 59 Tage verbleibend
  • 2.493 Unterstützende
    50% erreicht von
    5.000  für Sammelziel

HPU and KPU affected require acknowledgement of the metabolic disorder from healthcare and doctors

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Deutsche Petition

What is HPU (Hämopyrrolaktamurie)?

HPU is a metabolic disease which has been discovered a long time ago that causes a malfunction in the production of haem (/hem). Haem is a molecule bound to iron which is crucial for the functioning of many other proteins such as haemoglobin for oxygen transport. In people with porphyria (which is recognized as a disease in Germany), one enzyme of the haem production is impaired. In HPU affected, three to four steps of this biosynthesis are malfunctioning.

Therefore, vitamin B6, zink and sometimes manganese are excreted by the body at such high rates that it can't be balanced by any dietary adjustments. The absence of these substances affects many parts of the body. Vitamin B6 for example is involved to some extend in any process of the body.

Besides losing all these minerals and vitamins, the ability of the body to detoxify itself is reduced and (environmental) poisons and heavy metals accumulate, which leads to significant health issues. Porphyria as well as HPU are ususally genetic diseases but can be initiated by acute poisoning (heavy metals, vaccinations etc.) or by stress and infections.

People who are living with HPU are more likely to be affected by autoimmune diseases (like hashimoto, diabetes mellitus type 2, lupus and many more). Additionally, many suffer from allergies and histamine intolerance, celiac's disease, fructose or lactose intolerance.

Affected people must pay every examination, test and therapy by themselves. If they do not have enough money, the therapy is not possible, because the German health care system does not acknowledge the disease and therefore does not support affected in any way.

What we demand:

!. We want a group of experts that is made up of affected people, representatives of the German ministerium of Health, representatives of the health insurance companies and scientist and doctors who are informed about the issue.

  1. A study should be conducted about the topic of HPU/KPU working together with the affected with the goal to get heath insurance companies to recognize HPU as a disease or at least rates it as a metabolic dysfunction that needs to be treated and leads to far-reaching repercussions if it is not. HPU and KPU are very similar diseases, KPU affected suffer from a lack of B6, zink and manganese as well, the treatment is similar as well, therefore we can restrain from explaining KPU further but the study should involve both diseases.

  2. Until the study data is analyzed, there should be an agreement for a short-term solution for the financial support for the supplements between all parties from point 1.

Begründung:

Justification:

HPU affected often suffer through years of tests and treatments until they finally get their diagnosis. Doctors don't take them and their complaints seriously and are generally not informed about the disease.

Patients suffer from severe (chronic) fatigue, joint pain, depression, intolerances, headaches (migranes), liver malfunctions, severe eczema, reduced tolerance for stress, cardiovascular diseases, infertility, problems during pregnancy and giving birth, anemia, muscle pain, overweight (which can not be reduced by diets or physical activity) and many more. There may be a link between HPU in C´children and AD(H)S and aoutism, in severe cases there can be suicidal tendencies especially in children.

Quality of life is greately reduced and treatment of single symptoms generally does not bring any lon-term changes because the cause is not adressed. Inability to work is common and in some cases this can lead to financial crisis.

Up until this time, all tests and treatments as well as supplemets (high concentrations of Vitamin B6 and minerals) must be paid by the individual. This can be a serious a financial burden, as 200 Euro per month and even more is not unrealistic. Many patients are not able to spend that much money on their treatment over an extended period of time.

Because the detoxification of the body is impaired and toxines accumulate in the body very easily, HPU affected must watch out for (environmental) toxines in cosmetics, clothing, furniture, food or sometimes even air.

Sources: McGinnis W, Audhya T, Walsh W, Jackson JA, McLaren-Howard J, Lewis A, Lauda P, Bibus DM, Jurnak F, Lietha R, Hoffer A. Discerning the mauve factor, part 1. Alter Ther Health Med: 2008 Mar-Apr; 14(2):40-50 McGinnis WR, Audhya T, Walsh WJ, Jackson JA, McLaren-Howard J, Lewis A, Lauda PH, Bibus DM, Jurnak F, Lietha R, Hoffer A. Discerning the mauve factor, part 2. Altern Ther Health Med.2008, May-Jun; 14(3):56-62 Kamsteeg J. HPU und dann? KEAC 809117. 2005 Kamsteeg J. HPU-eine angeborene Porphyrinopathie? Zeitschrift für Umweltmedizin, 2002 (3) Kuklinski B Kryptopyrrolurie, nitrosativer Stress und Mitochondriopathie, 2004 Kuklinski B. Zur Praxisrelevanz von nitrosativem Stress, Umwelt-Medizin-Gesellschaft 18/2, Bremen 2005, 95-106 Ritter T., Baumeister-Jesch L. Störung der körpereigenen Entgiftung durch Hämopyrrollaktamurie (HPU). OM& Ernährung 2008;214 Ritter T, Baumeister-Jesch L. Stoffwechselstörung HPU. Für Patienten und Therapeuten. VAK Verlag 2014

Im Namen aller Unterzeichner/innen.

KA, 07.11.2017 (aktiv bis 20.01.2018)


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Warum Menschen unterschreiben

Not getting proper treatment makes one so sick you become suicidal.

I have eczema just like this person. Her health conditions make her eczema worse.

Every condition that requires any sort of treatment needs to be recognized.

All diseases should be recognised, so the patients can get the treatment/attention they need.

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