The Romberg's Connection 2009 Survey Results

Closing Comments

Page 111. VIII. Closing Survey
1. Any closing comments:
Comments
(63)
Thank you!
Thank you for all that you are doing to research this terrible disease.
I would love to get a copy of this survey once complete, to give to my doctors here in San Diego, CA. My husband is in the military and a lot of the military doctors are very curious about me and want to learn more.
Thank You to all who have helped devise this survey. RESEARCH is the route to answers.
I am the only member in my family who has Romberg's, but not the only one with an autoimmune disease.
Thank you so much for making this survey. I hope it gets to you on time!
Thank you for asking me to participate in this survey.
I am very disappointed by the medical system in my country. No one cares........ I was never informed about my disease. The drugs they gave me were small experiments ("let's see if u take that what happens!") and so on....I thank this site because here I found the support I need and information.
I am still at a loss as to what could have caused it, and why it is affecting me at 26 years old. I am having a lot of anxiety now about becoming pregnant (which I was hoping to be in the next year). Many people have expressed concern about changes in their pregnancy.
Thank you for taking the time to put this all together.
This was very user friendly. You did a great job creating this survey. Thank you for doing this. I hope it will be helpful to many.
Gerri - sorry this is late - have just had second fat injection operation. Finding this group has been a godsend for me - I had always thought I was the only one of my kind.
I only had surgery on 10-02-09. It may be too soon to tell whether the fat will remain. It looks better and I will be going for a check-up in 6 weeks time. Will keep all posted.
Thanks for doing this Gerri!!! It must have taken a lot of your time. I do hope something common to all of us Rombergers will reveal itself!
Thanks again to you & Marilyn.
Love
Jane (UK)!
Hopefully, someday we will find the cause of this syndrome. Thank you for the survey/study.
Thank you for taking the time and effort to create this survey as well as the website. Like so many of our members, I felt devastated and lost when my son was diagnosed with PRS and did not know where to turn. Initially the medical community told me there was nothing we could do except to wait for this disease to "burn itself out" and then at that time proceed with surgery. This "Connection" is the lifeline to a body of patients' experiences and knowledge of this dreadful, heartbreaking "syndrome". I hope one day the "Romberg Connection" will be put out of business because someone will have discovered the cause and then the cure for this disease.
My GP (General Practitioner) says I am a mutant.
My thought is that PRS, Localized Linear Scleroderma, Trigeminal Neuralgia, Silent Sinus Syndrome, and Morphea, along with various unilateral eye, ear, nose and mouth symptoms are all part of a one-in-the-same atrophic process, and that they are given a diagnosis based upon which medical specialty first makes that diagnosis. For example, a rheumatologist is going to name it differently than a neurologist will.

I liken the atrophic process to a large snow storm. It's all the same weather front, but it affects different areas in different ways, and to varying degrees. Some are affected by hair loss, some by vision or eyeball changes, some by neurological symptoms, others by dental or dermatological changes, etc. but it is still all the same "storm".

My personal feeling is that we should not limit our research or thinking just to PRS, but we should include these other atrophic cranial/facial diseases in our research because they may all be the same beast, just named differently, depending on who labeled it. If we had been diagnosed with Localized Scleroderma, that might be all we were looking into and we would know nothing of PRS, so we should branch out a bit in our research.

Thanks!
This disease has so much more to it than this survey dwells on, like the everyday struggles we all go through with doctors and the always feeling bad and bloom (fatigue feelings) we have all day and how that effects our everyday life and how others look at us... what research we have done as a person... What ya'll have done is great but it is a shame that doctors aren't doing this or helping at all. This is crazy how the medical department treats people like us. Millions go un-diagnosed a year and millions like us don't get any help at all.
Nichole
We need to become politically active to promote research for orphan diseasesí. With the change in administration (at last) in DC, now might be time we have leaders who will listen.
I am a member of Marilynís Yahoo group, but have been silent for a few years now. The reason being that the Rombergís has progressed and I am very depressed because of it. I should be looking to the group for support during this time, but do not want to discourage anyone who feels that theirs will not come back again. So I read the posts from the group but do not participate for this reason. This is such a devastating disease and nobody can know how it feels or what we have to go through every day. I am amazed that some people in the group post their photos. I stay away from photos all my life because of this. I had my surgery at NYU (New York University) and wish I could get the strength to get it done again. I appreciate you taking the time to study this disease, I feel there are a lot more people who have it and do not know or their doctors do not know what to call it. I actually know more than most of my doctors about Rombergs and all of the symptoms. I hope and pray that someday they will find a way to stop it and find out what causes it. Thank You again for doing this study.
My Dad had Parkinson's disease - not sure if any link.
Thanks for doing the survey - look forward to seeing the results!
Thank you Gerri & Marilyn for all that you do with the Connection! Brian
SUCCESS with the survey
This affliction has not affected my life like some and because no one took it seriously my GP (General Practitioner) only found out in the last couple of weeks (and didn't really have anything to add), have not really taken it too seriously myself. Maybe I should have or would have if more professionals took an interest instead of "Oh I donít know... maybe it will go away, I donít really know". I just know I have one switched on dentist who recently passed away from breast cancer and I will forever be grateful for her interest. If anything I add to this helps you guys find out how this works and what can be done to stop the disfigurement and self esteem issues and the very real physical ailments that this thing causes, that would be great. Just because someone doesnít know what something is, doesnít mean it will just go away. Good luck I hope your survey yields something that parents of new PRS people can hold onto.
Great job on the survey. Thanks for all of your hard work. Much appreciated!
Our daughter is adopted (at 5 weeks old) so we really do not know her family history. So the questions regarding family I answered no to but they are subject to the unknown.
Great job Gerri & Marilyn. Thank you for doing so much to help PR.
I just joined the Group after just being diagnosed. I'm 51. My answers are somewhat incomplete because I don't have all the data. For instance I have many dental problems. Now...I'm making the connection that these problems could be from the Rombergs. I have always had trouble sleeping. So is this part of the Rombergs? So I'm in the process of back tracking my medical history as I learn more about the symptoms. I have only seen the reconstructive surgeon once and that was when I was diagnosed.
Thank you for the great effort in putting this together!!!
Good luck & thanks.
Thank-you for your dedication and hard work toward this effort.
Thanks for organizing the surveyÖ
Deciding to start my daughter on meds was a huge choice to make but I am so glad I did, vast improvement and activity has stopped. No side effects and my daughter is so pleased with the results. A very positive choice.
Thank you for doing this. I am extremely eager to see the results. Please let me know if you need additional information and/or if you see any pattern to the treatments that are working. There has to be an answer and a cure.
*Educate yourself and others about Parry Romberg Syndrome in a way that is comfortable for you. There is less fear or curiosity when the facial "difference" has a name.

*Have a print-out that explains the disease and bring it to doctor visits. See if you can fax or email it to them before the appointment, so they have a "heads up". Remember that most doctors are still unfamiliar with this disease. If they are not willing to learn about it...find another doctor.

*Educate yourself about the disability laws, especially if you have a child with PRS in school. Section 504 is an anti-discrimination, civil rights statute that requires the needs of students with disabilities to be met as adequately as the needs of the non-disabled are met. If your child has headaches, vision problems, attendance issues, they may be helped with a 504 Plan. Be an advocate for your child. Tell your school you would like to set up a meeting to talk about putting your child on a 504 Plan and making appropriate accommodation or modifications that can help your child to be successful. Just Google: Section 504 to learn more.

*If at all possible, occasionally meet with families or individuals who share the same rare disease... for friendship and support. These are the people who truly GET IT.

*If you are a parent of a child with PRS, talk about it with them. From the experiences we heard, one of the most painful things a parent can do is IGNORE OR DENY that there is a problem.

*Support the Parry Romberg organizations that are out there now.

*Above all...SUPPORT EACH OTHER! NO ONE HAS TO FEEL ALONE WITH THIS DISEASE."

Thanks for putting the survey together! It will be interesting to see the results.
Somewhere along the line I must have missed the question about TIAís (transient ischemic attacks) - I did not tick the "brain" thinking it meant mental state so I missed any follow through on that. I have suffered from TIAís or possibly a blood clot behind the eye - I take Cartia (low dose aspirin) every second day plus fish oil.

Marilyn and Gerri - thank you so much for putting this together - we just need a doctor or a researcher to use this information to find a cause and more importantly treatment and a cure.

Marilyn and Gerri
I can't thank you enough for your hard work and support.....and I know you put in many, many hours into creating this thorough survey. I am very impressed with the survey.

I believe that the information from this survey will be helpful to scientific/medical professionals who work to investigate Rombergs and search for clues to prevent/control/conquer the condition.

I would be happy to provide any additional information.....full name, address, etc..... if ever requested. There is hope in sharing information. I do feel that my Romberg's may have been triggered by dental work.

After a recent conversation with my primary care physician, I am going to schedule an appointment with an "Infectious Disease" physician. My doctor does not know that I will learn anything that might be helpful to me, but he does agree with my feeling that since I have lichen planus, an Autoimmune disorder, which affects my whole mouth, and Parry Romberg, which affects my face and tongue, it is a reasonable idea to follow up with someone who may deal with Autoimmune problems. I will share with you anything of interest that I learn.

The Romberg group, the e-mails, the contacts, mean a great deal to me. I do not feel alone.....and that is very comforting.

It is through the group that I found a wonderful plastic surgeon....Dr Linton Whitaker of the University of Pennsylvania.

Thank you both very much.
Beverly
Pennsylvania
Thank you for creating this survey! I truly hope we can all help to understand Rombergs better.
Am sorry I am not able to provide more telling info. We go around and around wondering what the triggers are/were. Unfortunately, we (me and child) have a situation that may be the "perfect storm" as we had a polluted area, atypical pneumonia and tick bites in a short window of time. Doctors say I am too anxious, but don't know how not to be.
I tried to answer as good as I could (German origin).
So the only treatment is 20 years ago, I still cannot remember very well.
If there are any problems in understanding my comments, please feel free to contact me.
Survey was easy to use. You did a great job putting it together.
Some questions could be a little clearer.
I just wish that there was some way to diagnose this so that those of us who are parents don't have to keep looking at our young children's faces every day for signs of PRS to see if they've appeared, or if they are going to appear. Of course, that's probably just me. I am thankful that I got it when I did in my life, because I'm not sure that I would have been able to.
We have been to doctors who have recommended Methotrexate and pulse IV steroid treatment. At this time, we are looking for alternatives. We are flying to NY to see Dr. Siebert about surgery. Hoping for surgery this summer!
Good luck with your survey.
Very interesting survey. My foot is a particular issue for me as the tissue loss means I can no longer run or walk a long distance. This seems unusual from other Rombergís sufferers I have spoken to, so am very interested if any others have problems with their foot.
Needed to be wee little clearer with the questions. Donít get me wrong they were good questions and covered everything but I actually had to reread several cause I didnít readily understand them.
Thank you. I hope this helps. I filled this out in lieu of my daughter, so it is third-person limited.
Any and all help is appreciated for this dreadful condition. More research needed.
Great initiative to have this survey!
This one was clearly about medical/technical issues; maybe another one on personal issues is a good idea?

I think people suffer more from mental than from physical problems due to Romberg. Anyway, well done!!!

Thank you for continuing your commitment to all of us.
Thank you for what you're doing!
Hope some of this helps.
Thank you
My daughter had lead poisoning as a toddler and I've always wondered if the Rombergs could be related.
I didn't answer some questions because they didn't apply to me. I hope this survey helps future treatment of this terrible disorder. It has been a very difficult and expensive thing to deal with.
I feel my symptoms are probably reasonably mild compared to a lot of people. At the onset of my symptoms, the specialist diagnosed it as scleroderma after a biopsy was done on my right thigh at the age of 8. It wasn't until I was in my late twenties that my local GP (General Practitioner) diagnosed it as Parry Romberg. He told me it was an unknown quantity but as my condition hadn't worsened from about the age of 13, he thought it had certainly stabilized. I have had a lot of back problems due to severe scoliosis and have had 5 back operations. The last one 12 months ago was the big one. Fused from L5-S1 to T9 with about 30 screws, rods on either side of the spine and 3" screws into the pelvis to stabilize the spine. Part of this could be caused by the atrophy in my back but my back specialists have never heard of this syndrome so we still wonder whether there is an association at all. If you need any more information please email me.
Pip
We should translate this survey in Spanish and other languages for more participation. I for one would be more than willing to help.
I really did not thoroughly answer the questions about the meds and the surgeries. Thatís because I was completely discouraged by the inability of the Docs to try any alternative remedies & diets despite the fact that nothing they were doing was helping. Then they lobotomized her at Albany Medical and that made her brain damaged with right sided weakness but instead of trying to help, they discharged her ASAP because they didnít want to deal with what they did. She went down hill after that. I truly hope no other PRS has to ever go through the trauma that we did. Katie died May 27, 2008 at the young age of 39 from complications of PRS.
Truly no one knew what to do for her.
Please let's help each other through this and hopefully with all the research and this survey, just maybe we can find hope and a cure.
Number responding = 63 / percent responding = 44% of total respondents (143).



Disclaimer: Please be advised that everyone's experiences may be different and appropriate treatments may vary. Any medical information that you find on The Romberg's Connection website must NOT serve as a substitute for a consultation with one's personal physician. Our visitors should discuss any specific questions or concerns they may have about Rombergs with health care professionals who are familiar with the specifics of their special case.
As a support group, The Romberg's Connection is unable to offer medical advice to anyone.

Throughout this survey, when we use the term "Rombergs" or "Romberg" we are referring to: "Parry Romberg", "Parry Rombergs", "Parry Romberg Syndrome" and "PRS".

This is an unscientific survey designed to gather information from those who must deal with Rombergs on a daily basis.