LPHS List

 

AFFECTED BY LPHS –

LPHS maybe rare but its found Worldwide -

My support group has people from all over the world including New Zeland, GB Scotland, England, Wales, France, USA, Urstraila, spain, Africa, Wales, Ireland, Germany etc.

There is a translation App on facebook which allows everyone to interact without the launage barrier making this a support group for everyone, everywhere.

PLEASE CONTINUE TO ADD YOUR DETAILS TO THIS LIST -
This is just to give you an idea of people that have lphs, there age, location and how long they’ve had the condition for -

  • Carol Had it for 12 years, stay in scotland/edinburgh. As well as lphs i have addissons disease,diagnoised june 2010,both conditions effect each other so its a bundle of joy.
  • Renee, 35 years old: LPHS 2 1/2 years: Tucson, Arizona USA
  • Connie ‎34 yrs- VA USA- I have been suffering for about 10 yrs but only diagonosed for 4. Wow it has been longer than I thought. I started feeling bad around age 24 but it got worse after the age of 27.
  • Robyn, I have had lphs since I was 17 I’m now 23 I stay in dundee scotland, I got diagnoised 4years ago
  • Imogen, 21 years old, Somerset, England, UK. Feeling bad for 6 years, got a lot worse 3 years ago, but only been diagnosed with LPHS for 1 year.
  • Andrea I’m 30 and Ive had LPHS for about 2.5 yrs
  • Melanie Ill be 30 next week…had LPHS for 4 years, diagnosed last november 2010
  • Sheila/Casey US 24 and has it for 8 years. Only diagnosed a year ago.
  • Stepheny I’m 37 now, I remember symptoms as early as 18 years old. I got my diagnosis about 4 years ago. I live in Florida, USA, although I lived in Ohio most of my adult life.
  • Dawn I am 37yo. Have had kidney stones on/off since I was 15yo. I grew up in Norwalk, CT USA, and now live in Tucson, AZ USA. Moved here in 2008. My recent pain started Feb/March 2011. So I am not diagnosed YET.
  • April I am 45, have had this issue for going on 13 years…finally diagnosed with LPHS, nutcracker syndrome and UPJ in 2009, I live in Hampton Roads, VA..got worse in the last year and a half to the point I seemed to miss work more than I was there before the nephropexy.
  • Holly started having kidney stone on April 11, 2007 at age 17. The pain started on April 24, 2007 and has never stopped. She’s been a sufferer for 4 years now and she is now age 21 lives in Atlanta, Georgia, United States of America.
  • Vicki I am 37 and live in Dayton WYoming I have had this LHPS for 14 years, diagnosed in 2007-08, can’t really remember.
  • Kristie Diagnosed October 2006 symptoms started october 2004. I am 32 yrs old and live in St. Louis Missouri, USA
  • Erin i’m 20, iv had pain for 7 years, i got diagnosed in 05/06 by Urologist Mr Mark Fraundorfer. I live in Tauranga, New Zealand.
  • Alison aged 50, lphs since 2001, diagnosed 2005, Herts. UK

 

  • JUST NAMES AND LOCATION:
  • CAROL SPENCE – EDINBURGH, SCOTLAND, UK
  • Holly Faris – Atlanta, GA, USA
  • Stepheny Smith – New Port Richey, Florida, USA
  • Tonya Turner – San diego. Ca
  • Melanie Botscheller – Wappingers Falls, NY
  • Andrea Goonan – Philadelphia (ish), PA
  • Erin Walter – Tauranga, New Zealand.
  • Melanie Hall- Derbyshire UK
  • Annette Crombie (Carol’s mum) – Edinburgh UK
  • Monique Williamson – New Plymouth, New Zealand
  • Ursula Thompson -Adelaide  Greenwith, South Australia
  • Angela Harris – Hyde, Cheshire, UK
  • Anne-Marie Battrick,(wife of Stewart), Lowestoft, Suffolk, UK
  • Susie Georget – Vermilion, Alberta, Canada
  • Gale Simcoe – San Diego, CA
  • Susanna Morgan – carmarthenshire, Wales , UK
  • Ruthie Windle – South Vienna, Ohio USA
  • Renee Wilson- Tucson, Arizona  USA
  • Rhonda – Oklahoma, US
  • Christine Wilson – Stillwater MN
  • Dawn Redfield- Tucson, AZ USA
  • Gina Olnhausen Lara- Burlington, Wisconsin Lyons, Wisconsin USA
  • Glenna Hall – RR 1 Northbrook, Ontario, Canada
  • Tracy Lawson (wife of John) Lincoln,Lincolnshire,Uk
  • Clare Perry- Bronte Country West Yorkshire UK
  • Frank & Bunny Maurone…Mantua, NJ near Philadelphia, PA  USA
  • Sharon Wright – BOZEAT, Northants, UK
  • Mark Goldsack (Bev’s partner) Weston-super-Mare, UK
  • Emma White – Hastings, East Sussex, England
  • Montse Cabezas – Barcelona,España
  • Andy Stevenson – Perth, West Australia
  • Alice Johnston – Colorado USA
  • Nadeene Wiparata – Napier New Zealand
  • Cheryl Hawkins-Williams – Raleigh,North Carolina & Los Angeles, California
  • Pam Lunsford Musick – Fort Wayne Indiana
  • Mary Dooley – Ireland
  • Tina Baker – Kent, England
  • Erin Boch – Ohio
  • Erica Coronado – Houston, Texas
  • Lissa White – Marlborough, Massachusetts – from Southern New Jersey
  • Barbara Bradley – Glasgow Scotland UK
  • Denise Coleman – Kent UK
  • Laura Lynch-Domingues – Shelburne, Ontario, Canada

Please leave a comment with your name, age, location and how long youve had LPHS …..

59 Responses to LPHS List

  1. Amanda-Lynn says:

    Amanda-Lynn, 18 years old: LPHS 1 year and a few months, diagnosed a few months after it began): Powassan, Ontario Canada

  2. John Waldrop says:

    I live in phoenix, az and have been told for the last 2 yrs that the kidney stones are not causing my pain. I finally had a ct scan and mri that showed no stones but having the pain. I had a dr tell I have LPHS then said let me know what you find out.

    • Dawn says:

      John, what doctor are you seeing in Phx? I have been having problems with doctors in Tucson, and I called a Dr. Pretrides or something like that, but no return call yet. I do not have a diagnosis yet either. Renee and I have met here in Tucson, and it is nice to have others close by to talk to. If you haven’t already, join the LPHS Status Support Group on Facebook!

  3. Helen says:

    Hello, my name is Helen and I have had LPHS for almost 30 years, possibly 36 years. I have left part of My Story on the Comments Link (or, it could’ve been the Enquiries link!) as I didn’t know how to put it onto the My Story link. I then noticed that the last posting on the link was April, so perhaps it’s better to write on here?
    I am 53, live in Greater Manchester, UK. I am married with a son, who is now 28, and no longer at home.

  4. mckinley says:

    McKinley – 18 years old, pain since February 2010, only just been diagnosed lphs (kind of), passed kidney stone in October 2010. Southampton, UK.

  5. Lance Lang says:

    I am 37 years old (38 2011) and was diagnosed with LPHS in early 2003. Was diagnosed after countless MRI’s CT’s, Kidney Biop’s, Blood test’s etc. Have 5-10 Extreme flareups a day along with the constant Stabbing pain accompanied by Nausea and vomiting.

  6. Julie Jurgens says:

    Hi, my name is Julie Jurgens. I have lived with this for 10+ years. Have had 1 auto-transplant. If anyone has any questions, please feel free to email me. richandjulie2006@yahoo.com or contact me on facebook

  7. CARLA BROWN says:

    45, GRANTS PASS,OREGON DIAGNOSIS 2008 /FIRST LPHS FLARE 14 YRS OLD(31 YRS)

  8. Ursula Thompson says:

    I have had LPHS for over 10 years I believe longer but was never diagnosed until I was lucky enough to come across a doctor who knew all about it I’m from Adelaide South Australia

  9. Christine Wilson says:

    Stillwater, MN LPHS 1.5 years

  10. AnneKristen Bennett says:

    if anyone wants to contact me, I’m on facebook and if you can’t do that, I’m Annieinlouisiana@aol.com.

  11. Susannah Wollman says:

    My daughter, Lauren, was diagnosed about three years ago. She also has endometriosis, kidney stone disease, kidney disease, lupus, and has just finished a course of chemo for melanoma. She is 31.

  12. Susannah Wollman says:

    Carol, can we use this list? For our book? For LPHS Awareness Day?

  13. natasha reece-evans says:

    natasha im 23 from swansea,wales,uk. ive been suffering about 6years and diagnosed with lphs in june 2011

  14. Bev Goldsack says:

    Bev, 40, 11 years with LPHS only diagnosed 6 years ago. Weston-super-Mare UK

  15. Cindy Coe-Semblante says:

    My name is Cindy Coe-Semblante, I am 44 years old and was diagnosed with LPHS in June of 2011. Started having symptoms about a year ago. I live In Grants Pass oregon, USA

  16. Susan says:

    Susan – Age 47 – Vancouver Island, British Columbia Canada – Diagnosis in 2004 age 38,
    First symptoms age 19, flare-ups at ages 27 & 34 requiring medical attention & hospitalization, then 2+ year medical crisis at age 36 that lead to diagnosis of LPHS. Now age 47 with strong, frequent (almost daily) pain. Treated with blood pressure medication, antidepressants, methadone, and subcutaneous IV lidocaine. Life was not bearable until methadone and IV lidocaine part of treatment plan.

  17. Sarah Hill says:

    Sarah, 27, Norfolk – UK.

    Been suffering for 3 years, diagnosed earlier this month.

    • Michael says:

      you look perfectly hetalhy I thought the same but felt the pain during the whole off-season when we would have winter practice . I was a sophomore in high school when I was diagnosed.

  18. Marlene Manion says:

    I have been diagnosed with LPHS for one week now. I believe I have had symptoms for 5+ years. I am a 30 year old female.

  19. KARIEMAH MARIS says:

    I AM SOUTH AFRICA AND HAVE BEEN SUFFERING SINCE 1998 AND WS DIAGNOSED IN 2006 WITH LPHS

    • admin says:

      have you joined our support group?x

    • kariemah marais says:

      Hi to all you LPHS ‘S out there . If any one can advise me how to start a support group in south africa it will be appreciated.When you say LPHS to a doctor it’s lioke speaking greek . I am try to locate other who suffer from LPHS here in the Western Cape , South Africa. Please mail me advice

      • admin says:

        hello, the support group we have is worldwide, it has everyone from america, uk, new zeland, austraila, spain, france etc. if you still wish to set up your own then facebook is the best place to do it xx

  20. Michelle says:

    Michelle , Flemington, WV , I am 30 yrs old and have had it since 2003…

  21. Arlene H Knox says:

    Arlene, Lochgilphead, Argyll. Had episodes of pain & haematuria since I was 17 – I am 34 now. Was diagnosed with LPHS at Ninewells Hospital, Dundee, Scotland about 6 years ago.

  22. kariemah says:

    Hi all . I to am keeping up the fight to inform and have decided to create an organisation here in south africa that would educate and help raise funds for our plight. At present my first battle is to raise funds for my own operation to have the morphine pump replaced. this is a costly excercise but i believe God will help me while i try to help other . the pump works fantastic i can atleast move around on good days. together with Tai Chi that by boyfriend has introduced me to , it really works try it

  23. Susanna says:

    I am 36 ljve in Wales uk been having symptoms an various tests for 11 years still awaiting diagnosis of lphs but have all the symptoms …

  24. Susie says:

    I have suffered with left quadrant pain since I was sixteen. I have been diagosed with appendicitis, endometriosis and told that I could not have children, I have six children. I have a malrotated kidney that has had surgery in 2005.
    A couple of months ago I was told that it looked like I may have LPHS. The pain is so draining but I hate having to explain or complain, I usually come home from a full day of work and hide the tears get through supper and hibernate with my heating pad for the rest of the night. I have been prescribed and used so many of the pain killers as has been described in your messages, all that it seemed to do for me was give my a fuzzy outlook and never been pain free. I have a patch called Butrans 20mcg, it sometimes takes the edge off an episode but never takes away the pain. I have been hospitalized because of the pain but all that seems to happen is just giving more pain killers and no relief.

  25. Erin Greenwood StJean says:

    My Name is Erin Greenwood StJean feel free to find me on facebook I had issues all my life with bladder infections and kidney failure at 7 years old. They started back up but always had infections pain and blood in urine. My parents brought me to over 10 specialists over the years and no one could tell them why.

    When I hit my 20;s I got much worse flare ups every few weeks. I was diagnosed in 2010 with LPHS I am the only person known in my city we also think my daughter my have it she has all the same symptoms as I did but no doctors will conform it till she is older.

    I am having a experimantal surgery they try with people with LPHS called a AUTO kidney transplant done by DR LUKE in london it has only been done 20 times worked 18-20 so we are hoping we get the date soon and that it works.

    I am so tired of these flare ups I am in the hospital every few weeks my drs dont work together the emerg nurses treat us like we are over reacting. I am under home care on a picc line with hydro morph and I am so tired of living like this.

    I am very excited to find this group I feel so alone all the time.

    • cindyschnarr says:

      Hi Erin

      So happy to hear that there is someone else in Ontario that I can finally communicate with!!!!! People just seem to be coming out of the woodwork with this disorder. That’s awesome. At least we have each other for support. I was diagnosed last year with LPHS after 3 yrs.of investigation- you know all about it – the myriad of tests!!!!!!!!! Just wondered if you ended up having the autotransplant with Dr. Luke in London? How are you feeling these days? Do you know anyone else from Ontario who has been diagnosed? Look forward to hearing from you. Please e-mail me at my personal e-mail address cindyschnarr1@hotmail.com. A fellow LPHS Survivor!!!!!!!!!!

      • admin says:

        Don’t think erin checks in on here much but u can speak to her directly in the Facebook support group! If ur not on Facebook then il pass ur comments on to her x

  26. Glenda Oberholtzer says:

    Wow I feel like I just hit the jackpot! All tis info is great. I was diagnosed with LPHS in sept of 2011 after 2 years of numerous episodes, countless tests and trips to the ER. My GP was great with referrals to specialtist and getting me in quickly for tests but was never able to give me a diagnoses. After a year and a half wait to see a pain specialtist I was finally given a diagnoses of LPHS and Fibromyalgia by him. Luckily he had seen a cause when he was in med school, otherwise I believe I would still be in the dark wondering what the hell was going on in my body. I could go on and on but I just wanted to express my joy in finding first the fb page that led my to this web site.
    Thank You
    Glend Oberholtzer
    Taber,Ab
    Canada

  27. Allison Marcus says:

    I’m 33 & have had lphs for nearly 6 yrs. Am in NYC suburbs & wondering if there’s anyone in the area who’s avail to webchat or synch up to commiserate. I love this site as the stories are all too familiar. I’d give anything to have a regional support network & I bet my nephro & PM would be very keen to hear from us, as we’re kinda rare birds. Btw the NIH rare disease website just added lphs.

    Pls ping me if interested in sharing stories in the area, as I’m so worn down….

    Wishing us all relief. -Allie

  28. Helen Pirouet says:

    Hi, I’m Helen. Started having episodes of extreme loin pain Feb 2010, diagnosed with LPHS Feb 2012. I’m lucky in that I don’t have pain every day. I have approx 3-4 episodes a year which can last from 1-4 weeks.

  29. Sandra says:

    Hallo,mein Name ist Sandra-ich bin 33 Jahre und komme aus Deutschland.Seit 2009 habe ich immer wiederkehrende Flankenschmerzen (immer schon Hämaturie).Da meine Mutter und meine Schwester auch Hämaturie haben.. glaubte ich das meine Beschwerden eine andere Ursache haben muss.
    04/2011 Diagnose Beckenniere -starkes Leiden- etliche Arztrennereien-keiner glaubte mir meine Schmerzen!! 11/2011 Harnleiterschiene- und große Hoffnung auf Linderung mit Nephropexie,welche im 01/2012 erfolgte.. 6 Monate hatte ich Ruhe.. seit 4 Wochen wieder unerträgliche Schmerzen!! Diagnose ist nun sicher LPHS!! Jetzt weiß ich,dass ich nicht alleine bin!! Über Kontakte (vielleicht sogar aus Deutschland) würde ich mich freuen!!

    • MARK GOLDSACK says:

      Hallo Sandra, es tut mir leid zu hören, dass sie leiden zu. Wenn Sie auf Facebook, finden Sie Unterstützung LPHS Gruppen, die sich wirklich kümmern weil sie haben den Zustand zu. Hoffe, Sie auf es gibt,
      Mark

  30. StacyH says:

    Stacy Horne, 20 from Edinburgh, Scotland. Had lphs coming up 2 years now, first had symptoms on 14th Dec 2011, diganosed March 2012.

  31. Multiplicity says:

    My name is glenna hall
    also known as glenna or multiplicity hall

    I am 64 years old from Ontario, Canada. Have had lphs for 21+ years now.
    Symptoms started in 1991 and diagnosed in about 1997 by a Nephrologist at Toronto General Hospital, Toronto, Ontario, Canada

  32. donnac says:

    Hello,my name is donna,I am writting about my son age 22,he has had LPHS for 5 years now,we live in Golden Meadow ,Louisiana,he has had all the test done even a kidney biopsy and a MRI for MS the biopsy showed a mild form of IgA and LPHS was said to be the cause of the pain. Well just like everyone else we cannot get any help,finally last year his family doctor put him on pain meds. but not enough to keep pain at bay,it just takes the edge off when the pain is not to bad,but when he gets an attack we go to ER and they of course think we are crazy,sometimes we can get a pain shot after a while but most of the time we are told this is not an emergency go home. His kidney doctor gave us a not to call him when we go to ER but they do not do it. If any one out there can help us get some kind of help please Email me at donnacollins@mobiletel.com He is currently taking oxycodone 30mg 4 times a day

  33. MrsVanderRad says:

    I’m Debby, in Hawaii- I was diagnosed with “chronic hematuria” as a toddler- and went through endless tests with a pediatric nephrologist throughout childhood- although I had no pain. Tests found no problems. At 16 the flank pain started. I went through more tests, which always showed hematuria, but no infection, stones, or any other problems. I had my nephrologist stumped! He always called me his mystery. I actually just gave up on tests and specialists, since my life was good, I felt generally healthy, and my pain was sporadic. The pain cleared up in my 20′s, but today I went to the doc, thinking I had a kidney infection. I am now 32. Sure enough, no infection… just pain and hematuria! This led me to some google searching, which led me to you! While I’ve never had an official diagnosis of LPHS, I know without a doubt that I’m in your “club”! If I ever decide to see a nephrologist again, I’ll go for the big diagnosis. For now, I’m happy to find a group- since I seem to be having a recurrence. Thanks for the website!

    • MrsVanderRad says:

      I just did some more research, and found on this site that a particular blood-pressure medication can bring relief for some patients. Well, I recently stopped taking Spironolactone (which I was taking for acne), which is also a blood-pressure medication that can act as a diuretic and increase aldosterone. I’m now wondering if this drug is the reason I have had no kidney pain for the past few years. This may not be the case, but If my symptoms continue, I would gladly go back on spironolactone! I would have never made the connection without this site! Thank you so much for putting this together!

  34. Tonya says:

    I live in LeRoy MN USA. I’m 44 years old. No previous problems with kidney stones or infections. My pain is on the right and I have an incidental finding of a small stone on the left. Differential diagnosis just given today so just researching to find out what I can. I’ve been having intermittent pain since November 2012. This past week has been daily, severe pain. Been to the ER twice by ambulance. Finally given some Zofran last Monday. Yeah! Last spring I had some surgery and have been using left over narcotics because my primary doctor insisted I use two Aleve twice daily which did not adequately treat the pain. Questions I have for those of you that have had it for a long time. My pain doubles with increased intraabdominal pressure. If I vommit, sneeze, cough, lift my foot off the ground, walk, sit up or lay down in bed, etc. Anyone else have this symptom? Does this go into “remission”? I see people write about pain being better but is that because of medications or healing? Also, I’m a full time nurse and wonder if I’ll be able to resume employment soon. How many people are gainfully employed? If you’re working, what kind of work? I find that walking can induce pain on bad days. Do I need to be looking at disability? I’m afraid I’m a busy body and “taking it easy” has been/will be torture for me. I will need to see a psychiatrist.

  35. bernaroos says:

    Female, 55, married, 3 children, 3 granchildren, teacher at a school for children with a learning or behaviour disorder. Dutch, living in Noordwijk in the Netherlands. Diagnosted with LPHS in 2005 at the LUMC, Academic hospital. My english is not the best, but I am trying. I have a very good kidney specialist and he was very quick with huis diagnose. I have a specialist at a special pain departement of the hospital and I have mental coaching. Two years ago I even followed EMDR therapy. At the moment I have just heard that I can not work anymore being told I am disabled now by LPHS.. I use a lot of pain medicines
    ( cymbalta, Lyrica, Oxycontin and oxynorm )

  36. koorahk says:

    Hi everyone. I am new to this site and hope I may be of help to some of you.Ihave had lphs for 33years, so know what you are all going through.I am not on Facebook,so private e-mails welcome at koorahk_korats34@hotmail.com
    Best wishes to you all,
    Helen

  37. brianna82394 says:

    My Husband Mark has it, I’m doing a research paper over it for my college english class. He is 20 years old had it for 15 years but was diagnosed about 5 years ago. From Texas.

  38. liaaam says:

    I’m 16 years old, from Scotland. Yesterday, I was diagnosed with LPHS after 18 months of violent pain and gross haematuria, with clotting sometimes. So glad to have a diagnosis after all this time, but kind of gutted there’s no treatment for it or cure:-( I have an appointment with my GP on Monday to talk about pain relief and I’ve had an urgent referral put into the chronic pain team at my local hospital so fingers crossed I find and effective pain killer. Has anyone had anything that helps etc? I’ve had tramadol, doesn’t work. I’m allergic to codeine and nefopam makes me hallucinate. Anyone know of anything that’s effective? Thank you!

  39. apples12 says:

    My name is Lisa.I live in North Bay, Ontario, Canada. I am 30 Years old, I have three children, I have Fibromyalgia. I was diagnosed with LPHS this year, specialist was able too see through medical records I have LPHS since 1997.

  40. Jennifer says:

    Jennifer 34 From Massachusetts problems started Jan of 2013 diagnosed officially March 2014

  41. Nicolaus Crabb says:

    My name is Nick I live in Olympia, WA but grew up in Scio, Oregon. I have had severe kidney pain and hematuria since I was 16, I am now 23 and was diagnosed with LPHS in 2013.

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