Pretty ill

Dear Alice, It is a common believe that if you have a wandering kidney you should must have a high blood pressure, as a knicked kidney vein can lead to hypertension. I did not have any hypertension only this tachycardia while standing. After they performed a nephropexy the tachycardia dissapeared. I had a kidney insuffience too (while standing) 24% - 76%. Due to kinking in the kidney vein the kidney got too less blood for normal functioning. If you have any questions please do not hesitate to write me. I ve been operated by a famous dutch Urologist in Amsterdam. All kidney related problems dissapeared after the nephropexy.

How the spleen is positioned in the humanbody

http://petticoatruler.tumblr.com/post/54862331966/dont-expect-them-to-be-able-to-go-out-on-a-whim

Picture of splenoptosis, wandering spleen, my spleen ;-D. There where no ligaments anymore for attaching the spleen on to my diaphragm. So the spleen "jumped" around in my upperbelly which is/was quite painfull. They re-attached the spleen with a splenopexy. Since then I do not have any problems with it.

If you have Type 7 A, B or C you can join our Facebook group. Altough the people who has this rare type of EDS is world wide very small 30/10, the Facebook group is quite big and International.

Liver without Ligaments-attachement. Here you can see the right part of my live (under the laprascopic tool). At this please there should me the falciform ligament. I am also missing the: Right triangular Ligament (and another one which name i am lost at this moment). The ligaments where non-existing at that time which caused a flipped and lowered right liver lobe. As I do have a problem with the growing of the collegene I, III and V and most ligaments do exist from Type I collagen. My ligaments which hold up my organs dissapear over time. 

Het enige wat hielp was krom lopen, het continu aanspannen van de buikspieren (zelfs tijdens het zitten) en het dragen van een heel strak medisch korset. Omdat veel artsen niet konden geloven dat het herstellen van het natuurlijk korset/buikwand wel eens zou kunnen helpen heeft het mij 5 (!) jaar gekost om uiteindelijk een kans te krijgen een buikwandreconstructie uit te laten voeren. Niet alleen zijn bij mij de buikspieren veel strakker (overcorrectie) gemaakt dan bij een gangbare buikwandcorrectie ook is er bij mij een groot Vipra-Mesh matje gebruikt omdat de kwaliteit van mijn bindweefsel door EDS is aangetast en dit matje de buik beschermd tegen opnieuw uitzakken.  Het is en was een ingrijpende operatie maar het resultaat mag er zijn. Na 5 jaar strakke corsetten, krom lopen en een stok sta ik toch maar weer mooi rechtop! De operatie is uitgevoerd door Dr. Scheufler uit Bern. Meer dan 200 hechtingen maar elke hechting waard. (P.s. de foto is 10 dagen na de operatie). De pijn is weg, het luchtmechanisme is weg ik voel mij weer mens.

Er zijn al heel wat Sneakermerken te krijgen maar Ishikawa uit Italie zijn wat mij betreft op dit moment übercool. De Ishikawa sneakers zijn gevoerd met badstof en hebben uitstekend voetbed waardoor ze superl ekker lopen.  Zelf vond ik ze in een winkeltje in St. Getrudis op Ibiza (waar ze overigens nog meer hele kekke spulletjes hebben). Prijzen liggen rond de €200

This is a copy of a letter written by Dr. Hal Dietz of Johns’ Hopkins University regarding a study aimed at developing a way to medically manage the vascular complications such as aneurysms and arterial rupture that can go along with Ehlers-Danlos Syndrome. 

 Mensen kunnen het zich vaak niet voorstellen als ze mijn zien "Je ziet er toch zo goed uit" maar ondertussen speelt zich een slopend proces af want niet te stoppen is.

Well written article about Ehlers Danlos Syndrom. Due to the very broad palette of this disease and the very individual appearance of this disease it is hard to include everything you can write about this disease.

The liver was hung up with help from a special kind of mesh in 2002. I needed to be in bed for 1 week, lying on my back. But it worked and now the liver and the kidney are artificially hung op. All my symptomes dissapeared. But I still did not know what was really going on in my body.

In the mean time my intestines got blocked by this lobe. And as soon I was in a horizontal postion, you saw litterly the intestines crawling under the skin. (There where litteraly freed from blockage). After two years I got so ill (severe tachycardia, extreme constipation -after dinner a needed to throw up as my intestens where full the body really wanted to get rid of the food - this situation was aggrevated by the pills they give me: Prepulsid to increase motiliy and motillium against sickness), I went to the ER. And there I found the first (east-German :-)) docter who examined me in a UPRIGHT position. Bingo! I had a nefroptosis a.k.a. a wandering liver. When Professor Dr. Newling from the VU in Amsterdam operated me, It was hard to catch the kidney as it was so loose and deeply down the pelvis. No connective tissue and fat tissue which normally holds up the kidney was seen. The called it a black hole. The Kidney (I had kidney isuffience to due to artery kinking) was sewed back on it's place and my problems caused by the kidney ptosis were releved: Kidney function back to normal, tachycardia dissapred, pseudo-blockage intestines dissapared and I started to live normal for a while.

Me and Bobbi are in a Facebook Group for People with Ehlers Danlos Type 7 Arthrochalasia and Dermatoparaxis. She writes some excellent pieces how it is to live with this complex disease Ehlers Danlos Arthrochalasia and Gastroparesis which is affecting here life in a severe way. But she keeps smiling and has that great sense of English humor.

Kristin Means who sufferse from a severe form of Ehlers Danlos Hyper Mobile Type explains the syndrom in a excellent way. She also points out the many "EDS-Type cross over" symptoms. Altough you are diagnosed as EDS-Hypermobile type you can still have symptoms from other types of Ehlers Danlos which makes getting a correct diagnose sometimes difficult.