Tag Archives: ehlers-danlos syndrome

Invisible Illness: Searching for a Cure

When Dr. Diana Driscoll was struck with a disabling invisible illness, Ehlers-Danlos syndrome with Dysautonomia, her quest for answers and compassion for other sufferers began.  As both a patient and a doctor (therapeutic optometrist), Dr. Diana has been working tirelessly researching a cure for those inflicted with these invisible illnesses such as CFS (Chronic Fatigue Syndrome or “M.E.”), Chronic Lyme Disease, Multiple Sclerosis, Fibromyalgia, Rheumatoid Arthritis, Ehlers-Danlos syndrome with Dysautonomia and Endometriosis.  Through collaboration, research and personal experimentation, she has found some answers to these debilitating diseases that have left many puzzled and without hope for so long.

In her desire to reach out to those who are suffering worldwide, Dr. Diana began the website www.Prettyill.com.  Here, you can view much of her research and gain support from a community of fellow patients.  While currently on professional disability, she is dedicating all of her available time and resources to the goal of providing hope to patients in discovering a cure.

Current clinical testing is being completely funded by Drs. Diana and Richard Driscoll.  This is not how science has traditionally worked, but this reflects their level of commitment to help individuals suffering from these chronic illnesses. Traditionally, applying for research grants and paying for large administrative costs not only slows research efforts, but can mean that the research is never completed. Drs. Rich and Diana Driscoll knew that it was time to instigate a change.  With great excitement, we are pleased to announce that Prettyill.com, run by Dr. Diana Driscoll, is currently partnering with Total Eye Care to begin preliminary clinical trial testing.

The initial patient testing consists of a blood test ($800 value), a questionnaire and ocular fundus photos ($125 value) and will be administered at NO COST to you, the patient. The deadline for participating in this clinical trial pretesting is November 31, 2012. If you or a loved one has been diagnosed with one or more of the diseases listed above, please contact us at Clinical_Trials@prettyill.com.

Invisible Illness Week

Total Eye Care will be conducting clinical trials for patients with dysautonomia, chronic fatigue, fibromyalgia, and multiple sclerosis. As a part of the study, participants will receive an eye exam at no charge. Currently, we still have some openings for patients with relapsing remitting MS. If you would like to be a part of the study please contact us at Clinical_Trials@Prettyill.com.

Dr. Diana Opens Her New Website for the Chronically Ill

Dr. Diana Driscoll PhotoIt’s been in the works for a couple months now, Dr. Diana’s new website www.PrettyIll.com is now live. Check it out. I think you all will be really impressed by all of the information available there with much more information still to come. The website will feature information, mostly in video format, for patients facing chronic illness such as Ehlers-Danlos Syndrome, Multiple Sclerosis, Postural Orthostatic Hypertension and Dysautonomia to name a few.

The PrettyIll.com website will also be the hub for a number of studies that Dr. Diana is starting. The first of which is Vascular Fundus Changes in Patients With High Probability of Chronic Cerebrospinal Venous Insufficiency, a study that is being done at Total Eye Care. The second study is Head Circumference Growth in Children with Ehlers-Danlos Syndrome Who Develop Dysautonomia later in life. There are other future studies planned as well. I hope you check out the new site and leave a comment!

Total Eye Care to Conduct Fundus Vascular Abnormalities Study

We are very pleased to announce that Total Eye Care will start its first clinical study next month. The title of the study is Vascular Fundus Changes in Patients With High Probability of Chronic Cerebrospinal Venous Insufficiency. Check out the video below for more information. We are recruiting patients with either Ehlers-Danlos Syndrome or Multiple Sclerosis so please spread the word. The video has a lot of good information on the study so please do check it out.

Dr. Diana Driscoll With an Exciting Ehlers-Danlos Update

What a journey this has been! Although a very challenging time, I feel incredibly blessed to know so many others on the same path. Please know that you help me, likely much more than I help you!

I wanted to reach out to those of you who suffer from POTS (or any autonomic dysfunction). This has been the most difficult aspect for most of us to deal with, and those of you who know me, understand. The symptoms can include the inability to stand beyond a few minutes, tachycardia, digestive issues, poor temperature control, anxiety, tremors, balance problems, twitches, myoclonus, fasciculation, memory problems, dizziness, fatigue, nausea, abdominal pain, weakness, hormonal fluctuations, difficulty breathing, and… well, why don’t we just stop there and take a breath?

We’ve also noticed that too many people with EDS also develop multiple sclerosis. Some of you are aware that a soft cervical collar at night time has helped us, as has Diamox (a diuretic that crosses the blood-brain barrier, taking fluid pressure off of our brains). This has been a consistent finding, but no one has been able to explain to me why it helps, and why it doesn’t eliminate the problem entirely, which has been a great source of frustration for many of us.

While researching EDS, M.S. and POTS, and considering my own symptomology and yours (and I’ll confess to being my own guinea pig, too), I’ve come up with a theory about what is happening, why, and what we can do about it. It’s a bit complicated to go into too much detail here, but understand that it all relates to sluggish flow of the CSF and our change in posture causing the brain to sink and rise, leading to chronic brain edema and a type of “normal pressure hydrocephalus”.

Because my son and I became symptomatic after a virus (although we had small symptoms that we could ignore prior to the viral attacks), I believed that the virus, or its antibodies, somehow began the cascade of symptoms. But because our children and my sisters and mother also had an interesting constellation of symptoms, I felt there was also a hereditary component to our poor CSF and/or veinous drainage from our brains.

As many of you know, Diamox has relieved much of the pressure on my brain, but now I will be having some imaging done to see if I have any blockages in my veins that could be opened (with a balloon or stent) to help with the condition. This is such a difficult condition to treat because it is dynamic (it changes with position, for example), yet medications are static (they cause one change).

I was beginning to show signs of multiple sclerosis, which is also not unusual for EDS patients. Research is expanding quickly and I will have some new information for you soon, I’m sure.

Until then, never give up.

Keratoconus – New Options for Patients

Due to the fact that one of the specialties at Total Eye Care is keratoconus we see many patients with this condition.  We recently updated our patient information on keratoconus page to reflect some of the new technologies available to our patients such as;

  • Mini scleral lenses, which provide excellent vision like that of traditionally fit gas permeable lenses, however with markedly improved comfort.
  • Corneal collagen cross linking, though not yet FDA approved, is a new technology that I expect will be of a tremendous benefit to our patients.

Announcing Lunch and Lounge with Dr. Diana

Portrait Dr. Diana Driscoll

Dr. Diana Driscoll

Effective 10/22/2010 we are going to put Lunch and Lounge on hiatus for a while.  We’ll make an announcement here when we bring it back.  Thanks to all of those that participated.

Many patients with questions and concerns regarding their challenges with Ehlers-Danlos Syndrome have contacted Dr. Diana for help.  Starting Friday, June 11 at Noon Central time, Dr. Diana would like to help as many people as possible by holding weekly conference calls.

Ocular Manifestations of Ehlers-Danlos Syndrome

It’s hard to find a comprehensive source for the ocular problems experienced by patients with Ehlers-Danlos Syndrome.  Our very own Diana Driscoll, O.D. wrote this article, placing the most up to date information in one place.

Our practice continues to be sought out by patients for help in their quest for answers to the potential ocular complications related to Ehlers-Danlos Syndrome, such as dry eye syndrome and keratoconus, as a result the number of patients we see with EDS grows rapidly.

This updated eBook includes many color pictures and references. It is the only book covering EDS and the eye. Ehlers-Danlos Syndrome: Your Eyes and EDS is now available on Amazon.com

Dr. Diana Driscoll Invited to Speak at the Ehlers-Danlos National Foundation 25 Year Silver Celebration

Dr. Diana DriscollWe are happy to report that Dr. Diana Driscoll has been asked to speak again at the Ehlers Danlos National Foundation’s  Conference.  This year’s conference will be the 25 Year Anniversary Silver Celebration of the Ehlers-Danlos National Foundation.  The conference is scheduled for July 15-17, 2010 in Baltimore, Maryland at the Renaissance Harborplace Hotel, and thus far includes over 17 doctors and researchers speaking on this under-diagnosed, yet often disabling condition. 

Pediatrician’s Guide to Ehlers-Danlos

I have not done and article on Ehlers-Danlos in a while.  We have updated the ocular symptoms of EDS resources and made them available with color photos on Amazon.com. The Eye Doctor’s Guide to Ehlers-Danlos also includes a link to a resource sheet to give to your doctors.