<div><strong><em>Help Us Bring Lena Back To The Front Row (Surgery For Ehlers-Danlos Syndrome)!!!!</em></strong>
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<div>Runterscrollen für den deutschen Text ⬇️
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<div><strong>Hey everyone!</strong>
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<div>We are Indre and Caro, passionate metalheads who love standing in the front row with our friend Lena in the middle of a large, happy crowd of people, watching our favorite bands perform live. Lena is the toughest of us all because she waits with us in her wheelchair for hours in front of the venue for the concert to start and fights with us for a spot in the front row. Unfortunately, this hasn't been possible for some time now, and we miss her very much!
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<div><strong><em>But: it will be possible again if we all help together!!!</em></strong>
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<div><strong><em>Please don't let us down!</em></strong>
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<div>Lena was born with Ehlers-Danlos-Syndrome, a rare genetic disorder which causes the connective tissue throughout the entire body to be defective. This can lead to a wide variety of complications and subsequent diagnoses, some of which can be life-threatening.
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<div>In Lena's case, this has resulted in the development of several vascular compression syndromes: Veins or arteries are compressed between other blood vessels or organs constricting blood flow.
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<div>For example, her left iliac vein is almost completely squished together (May-Thurner Syndrome) so that, instead of flowing back up, the blood pools in the pelvis causing extreme pain. This can result in a deep vein thrombosis (and consequently a life-threatening pulmonary embolism) at any time.
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<div>Her left renal vein is also severely compressed (Nutcracker Syndrome), which means that the kidneys can no longer be properly supplied with blood. In addition, as a result of the compression, another blood vessel has formed through which blood flows to the spine (tronc-reno-rachidien). This can have serious neurological consequences such as paralysis and TIAs (so-called mini-strokes). Furthermore, long-term reduced blood flow to the organs and malnutrition can lead to serious consequences.
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<div>Lena is suffering every day from severe pain throughout her entire body and many other symptoms such as fatigue (severe, chronic exhaustion), dizziness, nausea, shortness of breath and circulatory problems. She is also hardly able to eat and is therefore underweight, which further weakens her general condition.
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<div>She can only stand for short periods of time, cannot sit upright for long and can hardly sleep. Even simple things like cooking or showering trigger severe symptoms, which is why she can no longer live alone and needs help every day.
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<div><strong><em>The good news is that surgery can help alleviate all of these symptoms!</em></strong>
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<div>This would be done by placing small tubes (PTFE prostheses) around the left iliac vein and the left renal vein to protect them from being squished together.
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<div>Unfortunately vascular compression syndromes are very rare and not many doctors around the world are familiar with them. Because of the genetic defect this surgery has to be done in a specific way, which is why it can only be performed at a specific private clinic in Germany. The surgeon there specializes in vascular compression syndromes and has decades of experience in treating patients from all over the world, particularly in combination with Ehlers-Danlos syndrome, which is very important for the success of the operation.
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<div><strong><em>The cost of the surgery alone will be €36000.</em></strong>
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<div>Unfortunately, health insurance companies do not cover these costs due to the new hospital reform in North Rhine-Westphalia.
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<div>Lena herself does not have the necessary funds, as she had to drop out of vocational school due to her illness and only receives a very small disability pension. Her family can only cover a small portion plus the additional costs that will arise. This is why we need your help!
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<div>Every donation is going to help Lena to finally be able to live again and do things a normal 27-year-old can do: go to concerts, walk her dog, meet her friends, cook, bake (and eat!).
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<div><strong><em>This surgery could change so much!</em></strong>
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<div><strong><em>Please support Lena! We are incredibly grateful for every donation, no matter how small, and for everyone who shares this fundraiser! ❤️</em></strong>
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<div><strong><em>We miss our Lena! Bring her back to the front row, so we can celebrate life with her again!!!!</em></strong>
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<div>Thank you so much!
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<div>Indre and Caro
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<div><strong>Diagnoses:</strong>
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<li>May-Thurner syndrome
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<li>Nutcracker syndrome
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<li>Pelvic congestion syndrome
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<li>Compression of the inferior vena cava
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<li>Diversion of blood from the left renal vein to the epidural plexus and into the pelvis (tronc-reno-rachidién)
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<li>Hypermobile Ehlers-Danlos-Syndrome
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<div><strong>Hi!</strong>
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<div>Wir sind Indre und Caro, eingefleischte Metalheads, und lieben es, mit unserer Freundin Lena inmitten einer großen, glücklichen Menge von Menschen in der Front Row zu stehen und unsere Lieblingsbands live zu erleben. Lena ist von uns die härteste, weil sie im Rollstuhl mit uns gemeinsam viele Stunden vor der Halle auf den Beginn des Konzertes wartet und sich mit uns einen Platz in der ersten Reihe erobert. Leider ist dies seit einiger Zeit nicht mehr möglich, und wir vermissen sie sehr!
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<div><strong><em>Aber: es wird wieder möglich sein, wenn wir alle gemeinsam helfen!!!</em></strong>
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<div><strong><em>Bitte lasst uns nicht im Stich!</em></strong>
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<div>Lena hat das Ehlers-Danlos-Syndrom, eine seltene genetische Erkrankung, bei der das Bindegewebe im ganzen Körper defekt ist. Dies kann zu allerlei Folgeerkrankungen führen, manche davon können sogar lebensbedrohlich sein.
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<div>Bei Lena haben sich dadurch mehrere Gefäßkompressionssyndrome gebildet. Dabei werden verschiedene Blutgefäße im Bauch zwischen anderen Gefäßen oder Organen eingeklemmt.
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<div>Z. B. ist ihre linke Beckenvene so stark zusammengequetscht (May-Thurner-Syndrom), dass sich das Blut im Bauchraum staut, statt zurück nach oben zu fließen und extrem starke Schmerzen verursacht. Jederzeit könnte es zu einer Thrombose (und infolgedessen zu einer lebensbedrohlichen Lungenembolie) kommen.
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<div>Auch die linke Nierenvene ist stark komprimiert (Nussknackersyndrom), wodurch die Nieren nicht mehr richtig durchblutet werden können. Dadurch hat sich bereits ein neues Blutgefäß gebildet, durch welches Blut zur Wirbelsäule fließt (tronc-reno-rachidién). Dies kann schwere neurologische Folgen haben wie Lähmungen und TIAs (sog. Mini-Schlaganfälle). Weiterhin kann es zu schwerwiegenden Folgen durch langjährige Minderdurchblutung der Organe und Mangelernährung kommen.
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<div>Lena leidet täglich unter starken Schmerzen im ganzen Körper und vielen weiteren Symptomen wie Fatigue (starke, chronische Erschöpfung), Schwindel, Übelkeit, Atemnot, Herzrasen, Kreislaufprobleme. Auch kann sie kaum Nahrung zu sich nehmen und ist dadurch untergewichtig, was ihren Allgemeinzustand weiter schwächt.
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<div>Sie kann nur kurze Zeit stehen und auch nicht lange aufrecht sitzen und kaum schlafen. Selbst einfache Dinge wie Kochen oder Duschen lösen schon starke Symptome aus, weshalb sie auch nicht mehr alleine wohnen kann und jeden Tag auf Hilfe angewiesen ist.
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<div><strong><em>Die gute Nachricht: eine Operation kann helfen, all diese Symptome zu lindern! </em></strong>
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<div>Dabei würden um die linke Beckenvene und um die linke Nierenvene kleine Röhrchen, sogenannte ringverstärkte PTFE Prothesen, gelegt, damit diese nicht mehr zusammengequetscht werden können.
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<div>Da Gefäßkompressionssyndrome sehr selten sind, gibt es auf der ganzen Welt leider kaum Ärzte, die sich damit auskennen. Aufgrund des Gendefekts muss diese Operation auf eine bestimmte Art und Weise durchgeführt werden.
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<div>Deshalb kommt dafür nur eine bestimmte Privatklinik in Frage. Der Chirurg dort hat sich auf die Gefäßkompressionssyndrome spezialisiert und jahrzehntelange Erfahrungen bei der Behandlung insbesondere in Kombination mit dem Ehlers-Danlos-Syndrom, was für den Erfolg der OP sehr wichtig ist.
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<div><strong><em>Die Kosten für diese Operation betragen 36.000 Euro.</em></strong>
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<div>Leider hat die Krankenkasse die Kostenübernahme aufgrund der neuen Krankenhausreform in NRW abgelehnt.
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<div>Lena selbst verfügt nicht über die entsprechenden Mittel, da sie aufgrund der Krankheit ihre Ausbildung abbrechen musste und nur eine sehr kleine Berufsunfähigkeitsrente bekommt. Auch ihre Familie kann nur einen kleinen Teil der Kosten tragen, sowie sämtliche Zusatzkosten.
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<div>Deshalb bitten wir euch um Hilfe. Eure Spenden können Lena helfen, endlich wieder am Leben teilhaben zu können und Dinge zu tun, die eine normale 27-jährige tut: auf Konzerte gehen, mit ihrem Hund spazieren gehen, etwas mit Freunden unternehmen, kochen, backen (und Essen!).
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<div><strong><em>Diese Operation könnte so viel ändern! </em></strong>
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<div><strong><em>Bitte unterstützt Lena! Wir sind für jede noch so kleine Spende und für jeden, der diesen Aufruf teilt, unglaublich dankbar! ❤️</em></strong>
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<div><strong><em>Wir vermissen unsere Lena! Bringt sie zurück in die Front Row, wir wollen mit Ihr wieder das Leben feiern!!!!</em></strong>
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<div>Tausend Dank, Eure Indre und Caro!
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<div><strong>Diagnosen:</strong>
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<div>May-Thurner-Syndrom
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<div>Nussknackersyndrom
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<div>Pelvic Congestion Syndrom
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<div>Kompression der unteren Hohlvene
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<div>Umleitung des Nierenvenenblutes links zum Plexus epiduralis und ins Becken (tronc-reno-rachidién)
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<div>Hypermobiles Ehlers-Danlos-Syndrom
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Slawomir Zardzewialy

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Help Us Bring Lena Back To The Front Row!!

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Help Us Bring Lena Back To The Front Row!!

Still €17,050 to go. Help us build momentum.