Surviving and Thriving with Chronic Illness

Clinical Trials!! How to Participate

Clinical trial pretesting is STARTING ON OCT 9! No charge to you! Chronic fatigue (or M.E.), Multiple Sclerosis, Rheumatoid Arthritis, chronic endometriosis, Fibromyalgia, Dysautonomia with EDS (or joint hypermobility), Chronic Lyme Disease. Limited number of patients can be accepted; by appt only. Contact us today!!!!
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how do i purchase part 1 and part 2 of the driscoll theory.  amazon is selling it for $999.99!!!  Did you know that?

i need help.  my name is patricia borntrager chico i live in goshen indiana

I would luv to have Lisa participate in any that she would qualify for; she is dx with ehlers-danlos III, Hyper adren POTS/ MCAD
I could not get the volume to work so excuse me if you answered my question
Thanks for all you do         Linda

Please keep me updated on all EDS studies I would love to be a part of one I have been told I have type 3 from the genetics dept at U of M in Ann Arbor mi. By a 9/9 score by the beighton criteria they didn’t do any genetic testing but I will say I have any & everything you can imagine my pcp thinks I have MS but that has not been confirmed I’m told 2 out if 3 of my children have it I think all 3 of them do they have most similar complaints but all at a more earlier age. I will do anything to find a study to participate in. I’m lost at the moment I can’t find any Dr that is taking my problems serious & it scares me to death. I wish there where more Dr.s in mi that knew how to help me & my children we are all in so much uncomfort & pain:(

Would love to be in the study have Dysautonmia with EDS
Both POTS and NCS.

I too would like to be kept up to date with any clinical Ehlers-Danlos studies, or any medical advice for the San Diego area. I am a disabled veteran who was medically discharged for having EDS. I am currently diagnosed with type 3, but am highly convinced that the diagnoses is wrong. I have symptoms of IBS, POTS, Chronic Fatigue, Chronic Pain, and much more. I don’t even know how to go about being diagnosed with any of them, as most doctors seem COMPLETELY clueless!

Have CFIDS,CVIDS,Fibromyalgia,Reactive Arthritis,IBS,GERD,Ampullary stenosis.1984Transverse Myelitis with years of following for M.S.Chronic Pain,DDD,etc.Can you help me?

I would be interested to be in a study. I have been diagnosed with EDS type III. I have chronic fatigue, fibro,GERD, IBS, TMJ, arthritis, chronic pain,  chronic headaches, myofascial pain, anemia, low blood pressure. and more.

My name is Alaina Smith I am 32 yr old mother of 2 beautiful girls n have been so chronically ill for the last 4 yrs I don’t even leave my home! I was a teacher n was always the go to person to help other out now it me people r helping. I have EDs POTS Chari Malformation hypo adernaline endometriosis intercrainal hypertension that switches between hyper n hypo. The pain is awful the changes within in my body r so scary! I have so much edema that my ring size went from a 5 to 9 I don’t recognize myself do to all the excessive weight gain n I eat hardly anything do to stomach issues my pancreatic duct clamp down! I just need help my life has been turned upside down I pray everyday for answers for healing n it has not come! I am blessed to have been diagnosised n treated by Dr Blair Grubb. I am pleading n begging for help not just for my but for daughters n family n yes it’s goes way back in my family my mother has it her mom mostly did Asher mom n my great grandma died at 32 Back in the 1930 with very similar systoms as I have currently. But anyways please help me it’s so hard to get anyone to pay attention bc I am Complicated case! Please please I beg you for anything that might help!!!

My 20 yr. old son, Tom, was officially diagnosed with RR MS in Feb. 2012.  I had always suspected a problem because of horrific nose bleeds, headaches and eye sensitivity before 2 yr.s of age.  Wondering if this could be related to CCSVI?  Would love to have him tested. Can he participate in the clinical study?

I’m interested in your trial. I have EDS, Osteoarthritis, Fibromyalgia, Chronic fatigue. But I live in Houston! Willing to travel, do you know a doctor in Houston who is a specialist in you field?

I have been diagnosed with fibromyalgia, chronic fatigue, and chiari malformation. I have extreme swallowing problems and edema. I would be very interested in your clinical trial.

Iissues have EDS. I have narcolepsy, Head aches, Chronic pain, very fatigued and getting harder and harder to function because I can’t seem to stop gaining weight. My back and joints are so fatigued and painful. Is there any connections with the weight.  My symptoms are so many and I really would like to be apart of any study. I seem to have pots issues and autonomic dysfunctions as well. There are many relatives in my family that also have EDS. we are 3 generations deep. One thing I have noticed is the girls in our family that have had the most children ( hormone changes seem to have more symptoms) Also our children seem to all be effected more strongly. I have sisters, nieces and grand nieces( set of twins) that make up the 3 generations. My mother has passed away but was afflicted with many EDS issues as well. I am eger to talk to you. I have been given conflicting advise as to whether bariatric surgery is a viable choice.Some have said it would be a death sentence for me because of the poor wound healing and mass cell issues. I need a dr. that really knows and understands EDS who is willing to look at my situation. My daughter and I are diabeticsand for years I keep asking, could it be our EDS bodies don’t respond well to insulin. I have to take mega doses that are way beyond normal. My daughter has tried every diabetes treatment and still has very High A1c. It seems like our bodies are in sick over drive. Please help!!!

My granddaughter has cp and eds.  We are just starting the journey with the eds.  She is three years old.  We are going to have all my grandchildren and children tested to see if they have this disorder.  Her biological great-uncle just had surgery because his aorta ripped. 

My oldest daughter has been diagnosed with MS and I am pretty sure she has EDS also.  Please help us in any way that you can.  We live in Ohio.

What is the status of your trial involving gastric issues?  My daughter, 20, suffers from all of the symptoms you mentioned and it has made her life very difficult.  Any info you could provide would be great.  Thanks.

I have EDS HYPERMIBILITY, dyatonomia , a serious case if the sleepies ( I’ve been sleeping for almost three days straight now, constipation, sweating from mostly head neck, double vision from childhood pretty much corrected by prisms, balance issues, elevated liver enzymes (no I don’t drink alcohol or take medications with tylen, stomach bloating ( having a cominiscipy in two weeks) c
I can’t find a doctor to treat all my symptoms but um willing to help you Dr Diana.


I have HEDS and am trying to get referred to a geneticist for vascular.  My Mom had an aneurism on her aorta the size of an orange.  Many people in my family have varying heart and hypermobility issues.

I have Dysautonomia, EDS, POTS - I have suffered from migraines for 30 years although I was only diagnosed 10 years ago.  I just found you and have so much to learn, but I immediately went to my Doc and asked to be put on Diaxom.  I just went through my cycle and did NOT get 2 migraines one at the start and one at the end .  It was the first time ever.  Does this mean for certain I am leaking fluid?  I am certainly willing and hoping to be a test candidate.  I was a dancer and performer in NYC for 15 years and now I am totally exercise intolerant.  Just walking up a flight of stairs winds me.  I have survived one terrible flare which included a terrible bout with gastroparesis, urinary tract problems with no infection, bloody diarrhea, passing out, B/P’s in the 70/30 range.  I am in a better phase now, but everything is relative.  We all want as much as we can get out of life.  I dream of taking a dance class again without passing out or having a heart attack.  Currently I am taking 225mg of Topamax, 50mcg of Levothyroxin, 20mg of Midodrin, 50MG of Metoprolol, Chlorephen-12MG, Diaxom 250MG-& 50,000IU of Vit D once a week- as needed I take Xanax & Butalbital I will hope to hear from you and wish you and everyone else on our journey well.  C

Hello, My name is Rebecca. I am 35 and have been dealing with illness for 12 years. I have been diagnosed with numerous illnesses,and am trying to find a common link or underlying cause to my issues. At 23 I was diagnosed with Fibromyalgia and Hypothyroid, at 29 I was diagnosed with endometriosis,adenomiosis,and interstitial cystitis. At 30 I was diagnosed with pancreatitis and gastroparesis. Most recently, I have been diagnosed with pelvic congestion,and had a left ovarian vein embolization for my enlarged pelvic veins. I also suffer from many spinal issues (herniations,scoliosis,arthritis,etc.) and have had brain MRIs show white matter lesions.I have always had an elevated ANA,but the doctors say they don’t know why. I struggle on a daily basis with fatigue,pain,dizziness,nausea,headaches,chest pain,frequent urination,flank pain, pelvic pain and abdominal pain. I am a mother of 3 and I am desperate to get my life back!! Most days I cannot function, and I do not know what to do next. Any advice or help would be so appreciated. I live in Florida,and I am will to travel if necessary.
Thank you,

Our daughter, Marlo has CRPS. We have consulted with Dr Pradeep Chopra and he agrees with my summation that she also has EDS, Dysautonomia, and Mast Cell Activation.  We need help!  We aren’t getting the interventions she needs.
Avers Avers

I would be interested in participating EDS hypermobility and probabbbly POTS

Please send form to my address merri prchlik 5011 n irish davison michigan 48423 i have many symptoms and ttt soon ty i will send it right back!

I am very interested in participating in one of your clinical trials. I would greatly appreciate any information you can provide in regard to clinical trials you maybe conducting.

Endometriosis is a standout amongst the most widely recognized gynecological maladies, influencing more than 5.5 million ladies in North America alone according to expert of Essay Writing Service at . The two most normal indications of endometriosis are agony and barrenness. A few ladies have torment before and amid their periods, and amid or after sex. This torment can be intense to the point that it influences a lady’s personal satisfaction, from her connections, to her everyday exercises. A few ladies don’t have any side effects from endometriosis. Others may not discover they have the ailment until they experience difficulty getting pregnant

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I agree that Endometriosis is a standout amongst the most widely recognized gynecological maladies, influencing more than 5.5 million ladies in North America alone according to an expert of coursework writing services. However, I need to know which patients you accept?


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