English Information
1
What is PH?
Pulmonary hypertension can be primary or associated with
many conditions affecting lung
and heart. The narrowing of the pulmonary blood
vessels causes an increase of pulmonary artery pressure.
This leads to a disturbance of the pulmonary circulation,
a reduced gas exchange and an increasing strain on the
right ventricle, culminating in right ventricular failure.
People with this condition experience chronic shortness
of breath and limited exercise capacity. The disease
can take a progressive course and lead to premature
death. Pharmacological therapy is difficult and should
better be performed in specialized centres for PH.
Several medical treatments are now available for severe
pulmonary hypertension. At end stage the double lung
transplantation will be a further option.
The first subtle symptoms of less advanced disease,
like dyspnoea and fatigue, are often of a non-specific
nature and therefore not even recognised by the patient
himself.
In many cases, medical examination is not very conclusive
as well, which leads to makeshift diagnoses like „lack
of training“ or „psycho-vegetative exhaustion“.
The causes of the disease are still unknown. It can
be of hereditary nature and affect subsequent generations
of a family. Therefore special attention has to be focused
on first degree relatives of the patients.
Who are we, and what are our aims?
We are a group of PH-patients
their families and friends who have founded the pulmonale hypertonie (ph) e.v., a foundation dedicated to help
patients and their families to cope with their personal
fate.
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The foundation established an information service for patients
and other interested people and an international
co-operation with different institutions dealing
with PH. |
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We want to provide informations on
symptoms, diagnosis and therapy options and arrange
contacts to specialised physicians. For this purpose,
the association compiles literature on PH and gets
it translated if it is needed. |
| • |
Furthermore, the self-help group
wants to contribute to medical research in this
disease, together with physicians and supported
by friends, members and sponsors. With the help of grants we would like
to support promising scientific projects which otherwise
could not be handled. |
Excerpt of the statutes:
WHO WAS RENÉ
BAUMGART?
René Baumgart was a young man who at the age
of 19 years was diagnosed to suffer from „primary
pulmonary hypertension“ and died of this insidious
disease at 23 years of age.
René Baumgart was born in Aalen (Baden-Württemberg,
Germany) in 1971. His mother died of primary pulmonary
hypertension when he was 10 years old. He had learned
the profession of a printer and was just about to pass
his profession examination before he died.
His uncle, Bruno Kopp, affected by the disease as well,
is the initiator of the foundation pulmonale hypertonie (ph) e.v., with the aim to improve self-help for patients
and their families and to intensify scientific research
in this field.
With the „René Baumgart - Stiftung“
the premature death of René Baumgart shall be
given a significance.
The René Baumgart-Stiftung
was founded on March 31st 2001 by the association
pulmonale hypertonie (ph) e.v.
It is the aim of the foundation to support research
in the field of the disease Pulmonary Hypertension in
order to help children and adults .
Legal background of the self-help
group
ph e.v. was founded on October 11th 1996. It is headquartered
in Rheinstetten, district Karlsruhe, Baden-Württemberg,
Germany.
The group is registered at the court district in Karlsruhe.
The tax and revenue office Ettlingen has acknowledged the non-profit character of the association. Therefore contributions and donations are tax privileged.
The self-help group acts on a selfless and non-profit-minded
basis. The management committee functions are honorary.
Donations are requested on
Bank account:
Account No. 8024596
Spar- und Kreditbank Rheinstetten eG
Bank code 660 614 07
Account holder:
pulmonale hypertonie (ph) e.v.
Patronage:
Social Minister a. D.
Dr. Erwin Vetter
Registered office:
Bruno Kopp
Wormser Str. 20
76287 Rheinstetten
GERMANY
PHONE: ++49 (0)721 3528381
FAX: ++49 (0)721 3528880
Contact:
PHONE: ++49 (0) 721 35 28 381
FAX: ++49 (0) 721 35 28 880
EMAIL: info@phev.de |
