March 31, 2016
The Dupuytren's Foundation is seeking a qualified Grant Writer. This person will need to submit a full resume and references.
Please contact
Dr. Charles Eaton
EMAIL: info@dupuytrens.org
PHONE: 949-287-3387
#dupuytrens #ledderhose
http://www.dupuytrensdiseasesupport.com/
https://www.facebook.com/groups/1622748151282109/
Thursday, March 31, 2016
Friday, March 25, 2016
12 weeks after my 1st Radiation Therapy Treatment for my Ledderhose Disease (Dupuytren's Disease)
On the Monday starting the 12th week after my 1st radiation therapy, I am back in Tampa for my second session of RT with Lawrence Hochman, RO. http://floridacancer.com/physicians/lawrence-hochman-do-facro/ I am feeling none of the anxiousness I felt prior. I know what to expect. OR, I should say, I know to expect nothing. That's a good thing!
I returned with some reservations about getting this second round of RT. I felt I had enough pain relief that I really considered not having this second session. It was explained to me that I needed it. It was explained that round 1 was like taking 1/2 your dose of antibiotics and round 2 was finishing up the antibiotics. The only reason I had such reservations is because I only get these two sessions of RT for life. I was wondering if I should "save" this second session for the future if I needed it. Needless to say, I returned and I am so thankful months later that I did!http://www.dupuytrensdiseasesupport.com/
I completed my week of radiation therapy with nothing to report. It takes appx 45 seconds per foot to administer the RT. Dr. Hochman's team is an "on-time" group. My appointment was at 9:30 am and at that time I was already in the room having my treatment and by 9:40 I am out the door.
The team took a look at my fibromas and felt them. The large one is still there and can be seen and felt with a little less of a pointed stone on the top. The smaller ones are so small they are well under the skin.
I continue my RT-vacation with my water sock, keeping my foot out of the chlorine and sun. We did take a kayak trip this time and did quiet a bit of vacation looking in Tarpon Springs, Weeki Watchi, Clearwater Beach and any other spot that looked interesting. Who would want to miss this?
The water is crystal clear!
I cannot stress enough to you how I connected to the Facebook forum DART - Dupuytren's Advocates for Radiation Therapy. It was this group that got me to where I am and I want to continue to be part of the Dupuytren's and Ledderhose Community and give back. I wouldn't want anyone to suffer as I did with this disease. If you do not belong to a Support Group, I strongly suggest you join us at: https://www.facebook.com/groups/1622748151282109/
Below is the DART logo you are looking for:
I returned with some reservations about getting this second round of RT. I felt I had enough pain relief that I really considered not having this second session. It was explained to me that I needed it. It was explained that round 1 was like taking 1/2 your dose of antibiotics and round 2 was finishing up the antibiotics. The only reason I had such reservations is because I only get these two sessions of RT for life. I was wondering if I should "save" this second session for the future if I needed it. Needless to say, I returned and I am so thankful months later that I did!http://www.dupuytrensdiseasesupport.com/
I completed my week of radiation therapy with nothing to report. It takes appx 45 seconds per foot to administer the RT. Dr. Hochman's team is an "on-time" group. My appointment was at 9:30 am and at that time I was already in the room having my treatment and by 9:40 I am out the door.
The team took a look at my fibromas and felt them. The large one is still there and can be seen and felt with a little less of a pointed stone on the top. The smaller ones are so small they are well under the skin.
I continue my RT-vacation with my water sock, keeping my foot out of the chlorine and sun. We did take a kayak trip this time and did quiet a bit of vacation looking in Tarpon Springs, Weeki Watchi, Clearwater Beach and any other spot that looked interesting. Who would want to miss this?
The water is crystal clear!
I cannot stress enough to you how I connected to the Facebook forum DART - Dupuytren's Advocates for Radiation Therapy. It was this group that got me to where I am and I want to continue to be part of the Dupuytren's and Ledderhose Community and give back. I wouldn't want anyone to suffer as I did with this disease. If you do not belong to a Support Group, I strongly suggest you join us at: https://www.facebook.com/groups/1622748151282109/
Below is the DART logo you are looking for:
Wednesday, March 23, 2016
What I did after RT for my Ledderhose Disease (and it's connection to Dupuytren's Disease)
From the first day of RT, I was asked to keep a cover on my foot for the week or so. That could have been a sock, a shoe or in my case because I traveled to Florida I wore a water sock so I could go into the pool everyday. I was asked to keep my foot out of the water (due to the chlorine) as much as I could. I also wanted to keep the sun away from the treated skin. When out of the pool, I wore my trusty Crocs and tennis shoes. I went about my normal day, grocery shopping, walking my laps and swimming. I tried to stay off any gravel or grassy areas since I didn't want to step on any unwanted rocks or stones.
I used these in the water and they worked perfectly. I could walk to the pool with the hard sole and left them on while in the pool. They worked out great. While not so stylish, I had to gather my pride and realize more than likely I would never see these people again. http://www.fila.com/womens-skele-toes-ez-slide-drainage/5PK14074.html?dwvar_5PK14074_color=033#q=skeletoes&start=1
I used these in the water and they worked perfectly. I could walk to the pool with the hard sole and left them on while in the pool. They worked out great. While not so stylish, I had to gather my pride and realize more than likely I would never see these people again. http://www.fila.com/womens-skele-toes-ez-slide-drainage/5PK14074.html?dwvar_5PK14074_color=033#q=skeletoes&start=1
Monday, March 21, 2016
8 weeks Post RT for my Ledderhose Disease and it's connection to Dupuytren's Disease
I've charted my weeks and months after Radiation Therapy, but I will recap some of those dates in the weeks to come.
First RT Session June 2015. It took appx 8 weeks before I really "saw" any change in my fibromas. It was a mild change at 8 weeks.
At 8 weeks, my foot looked a little swollen in photos. While I did not feel any of this, it looked as if the arch area was almost flat to the remainder of my foot. I have a normal arch so it was noticeable. The skin also looked "thin". I can't find another word for describing it. It was never a red spot, and never an irritation at any of the fibroma locations.
At 8 weeks I was definitely on my way to being pain free. The big toe pain I was experiencing was very mild and the fibroma pain was mild also. I would say a 3/4 out of 10 on most days.
When I walk a lot the fibroma will have a tender feeling when I take my shoes off and that feeling continues until the following day. I have resorted to wearing Crocs as much as I can at home. That firm cushion they have seem to sooth the tenderness. I definitely cannot go barefoot.
My plantar fasciitis(PF) prevents me from every walking barefoot, even at home. If you have PF the fibroma pain is right up there on the same pain level. My PF will not be the throbbing pain it looks like.
I have tried to stay in either Nike tennis shoes or Crocs from the minute I wake up until I go to bed. I find with this I get the most relief.
I have a pair of Teva sandals that I can wear, but I cannot wear them more than about 2 hours and really don't want to be on my feet all that time because my fibromas will be very tender. But, I do see the possibility of other shoes in my future.
First RT Session June 2015. It took appx 8 weeks before I really "saw" any change in my fibromas. It was a mild change at 8 weeks.
At 8 weeks, my foot looked a little swollen in photos. While I did not feel any of this, it looked as if the arch area was almost flat to the remainder of my foot. I have a normal arch so it was noticeable. The skin also looked "thin". I can't find another word for describing it. It was never a red spot, and never an irritation at any of the fibroma locations.
At 8 weeks I was definitely on my way to being pain free. The big toe pain I was experiencing was very mild and the fibroma pain was mild also. I would say a 3/4 out of 10 on most days.
When I walk a lot the fibroma will have a tender feeling when I take my shoes off and that feeling continues until the following day. I have resorted to wearing Crocs as much as I can at home. That firm cushion they have seem to sooth the tenderness. I definitely cannot go barefoot.
My plantar fasciitis(PF) prevents me from every walking barefoot, even at home. If you have PF the fibroma pain is right up there on the same pain level. My PF will not be the throbbing pain it looks like.
I have tried to stay in either Nike tennis shoes or Crocs from the minute I wake up until I go to bed. I find with this I get the most relief.
I have a pair of Teva sandals that I can wear, but I cannot wear them more than about 2 hours and really don't want to be on my feet all that time because my fibromas will be very tender. But, I do see the possibility of other shoes in my future.
Sunday, March 20, 2016
2015/2016 MY R.T. EXPERIENCE FOR MY LEDDERHOSE DISEASE
My experience after Radiation Therapy
My R.T. experience was uneventful. The first dose of R.T. was administered and during that week I applied an alcohol free moisturizer to the base of the foot several times a day. My R.T. was early in the morning so I did not apply anything prior to the treatment. I kept a sock and shoe on the foot as much as possible. However, I did go swimming everyday in the pool. I kept a pool sock on for that.
Appx day 3 I could tell there was some lessening of pain in my big toe. I would say my pain was a strong 8 out of 10. The treated area appeared to be a little puffy but I did not feel any swelling at all.
We left on day 5 and by this day I definitely knew the pain was lessening. It was still probably a strong 8. I experienced as much pain from the big toe and I experienced with the fibroma. The reduction of pain was with my big toe, not the fibroma.
The below photo is after both sessions of Radiation Therapy. The last treatment was late September 2015. This photo is January 2016, 3 1/2 months post R.T. The fibroma is almost flat to my foot. I can still feel the fibroma and it feels similar to a callus. It is no longer painful, however, when I walk a lot it gets tender. It normally recovers by the next day. I have had no further growth of any of my fibromas and I am pain free. RT gave me back my life.
http://www.dupuytrensdiseasesupport.com/what-is-ledderhose-disease.html
The statements or any opinions expressed within this website or any related or advertised sites are not intended to diagnose, treat, cure or prevent any disease. Any advice or comments given should not be relied upon as individual medical advice. No doctor patient relationship is intended everyone is advised to consult their own doctors for medical advice specific to them. There is no endorsement nor recommendation of any treatment nor physician noted on this site.
My R.T. experience was uneventful. The first dose of R.T. was administered and during that week I applied an alcohol free moisturizer to the base of the foot several times a day. My R.T. was early in the morning so I did not apply anything prior to the treatment. I kept a sock and shoe on the foot as much as possible. However, I did go swimming everyday in the pool. I kept a pool sock on for that.
Appx day 3 I could tell there was some lessening of pain in my big toe. I would say my pain was a strong 8 out of 10. The treated area appeared to be a little puffy but I did not feel any swelling at all.
We left on day 5 and by this day I definitely knew the pain was lessening. It was still probably a strong 8. I experienced as much pain from the big toe and I experienced with the fibroma. The reduction of pain was with my big toe, not the fibroma.
The below photo is after both sessions of Radiation Therapy. The last treatment was late September 2015. This photo is January 2016, 3 1/2 months post R.T. The fibroma is almost flat to my foot. I can still feel the fibroma and it feels similar to a callus. It is no longer painful, however, when I walk a lot it gets tender. It normally recovers by the next day. I have had no further growth of any of my fibromas and I am pain free. RT gave me back my life.
http://www.dupuytrensdiseasesupport.com/what-is-ledderhose-disease.html
The statements or any opinions expressed within this website or any related or advertised sites are not intended to diagnose, treat, cure or prevent any disease. Any advice or comments given should not be relied upon as individual medical advice. No doctor patient relationship is intended everyone is advised to consult their own doctors for medical advice specific to them. There is no endorsement nor recommendation of any treatment nor physician noted on this site.
Saturday, March 19, 2016
2015 RADIATON DOSAGE FOR MY LEDDERHOSE DISEASE
Dr. Hochman follows the German protocol by Prof Seegenschmiedt. That protocol is 3GY, for 5 days with a break of appx 12 weeks and then another 3GY, for 5 days. I waited the full 12 weeks. I had no post radiation therapy complications. Some people do experience some side effects like extremely dry skin to a few people blistering and the skin becoming inflamed/red.
The above machine was used to administer the radiation therapy. The attachment is where the mold is located. The mold then is placed precisely over the foot and lined up with the doctors drawing and tattoo area. They lay a "bolus" over my foot. This is a cool damp feeling material that allows the radiation to be delivered closest to the skin. Then the radiation therapy is administered. Lasting appx 45 seconds per foot.
http://www.dupuytrensdiseasesupport.com/what-is-ledderhose-disease.html
The statements or any opinions expressed within this website or any related or advertised sites are not intended to diagnose, treat, cure or prevent any disease. Any advice or comments given should not be relied upon as individual medical advice. No doctor patient relationship is intended everyone is advised to consult their own doctors for medical advice specific to them. There is no endorsement nor recommendation of any treatment nor physician noted on this site.
Friday, March 18, 2016
2015 1ST DAY OF RADIATION THERAPY FOR LEDDERHOSE DISEASE
 |
| My right foot, 2 nodules |
I go in for my first treatment and tell the assistant about my other foot. He moves forward with the treatment on my right foot. They lay me down on my stomach, prop my foot on a pillow, lay the bolus over the treatment area, places the mold in place, and administers the dose. It takes about 45 seconds to deliver the dose. He comes back in with Dr. Hochman. We do another exam of the left foot and YES, I have a nodule there! Overnight? I remember several people saying their nodules came up overnight. We move forward with making a mold for the left foot. It also gets 4 tattoos (ouch) and mapped. I will return that afternoon for that treatment. They will make the mold and do the insurance paperwork. I return in the afternoon, treat the left foot. The Tuesday - Friday treatment goes according to plan. It takes appx 45 seconds a foot. The office is on-time every single day. So within 10 minutes I am in and out and on my way.
The two round circles are fibromas, the larger circled fibroma is appx 1.4 mm and the smaller .8 mm. A shield was made to administer the radiation to the are within the larger area. There are 4 tattoo's, not very visible. The R.O. used a sharpie to mark the nodules and area to be irradiated.
http://www.dupuytrensdiseasesupport.com/what-is-ledderhose-disease.html
The statements or any opinions expressed within this website or any related or advertised sites are not intended to diagnose, treat, cure or prevent any disease. Any advice or comments given should not be relied upon as individual medical advice. No doctor patient relationship is intended everyone is advised to consult their own doctors for medical advice specific to them. There is no endorsement nor recommendation of any treatment nor physician noted on this site.
Thursday, March 17, 2016
2015 NIGHT BEFORE R.T. NOW WHAT? DO I HAVE LEDDERHOSE ON MY LEFT FOOT TOO?
Sunday before my Radiation Therapy scheduled for Monday
I feel this firey, hot spot and itching on my left foot in the same exact location as the small nodule on my right foot. OH NO! All I can think is this foot has it too. How can this be? I've had no reason to think I have this in my other foot. But this sensation of fire and itching keeps on all day and night. I have this same sensation in the other foot.
http://www.dupuytrensdiseasesupport.com/what-is-ledderhose-disease.html
The statements or any opinions expressed within this website or any related or advertised sites are not intended to diagnose, treat, cure or prevent any disease. Any advice or comments given should not be relied upon as individual medical advice. No doctor patient relationship is intended everyone is advised to consult their own doctors for medical advice specific to them. There is no endorsement nor recommendation of any treatment nor physician noted on this site.
I feel this firey, hot spot and itching on my left foot in the same exact location as the small nodule on my right foot. OH NO! All I can think is this foot has it too. How can this be? I've had no reason to think I have this in my other foot. But this sensation of fire and itching keeps on all day and night. I have this same sensation in the other foot.
http://www.dupuytrensdiseasesupport.com/what-is-ledderhose-disease.html
The statements or any opinions expressed within this website or any related or advertised sites are not intended to diagnose, treat, cure or prevent any disease. Any advice or comments given should not be relied upon as individual medical advice. No doctor patient relationship is intended everyone is advised to consult their own doctors for medical advice specific to them. There is no endorsement nor recommendation of any treatment nor physician noted on this site.
Wednesday, March 16, 2016
2015 RADIATION ONCOLOGIST CONSULTATION FOR LEDDERHOSE DISEASE
Radiation Oncologist Appointment with Dr. Lawrence Hochman for June 2015
The consultation appointment is set for a Friday. If all goes well, they will map my foot and prepare the molds for the radiation therapy. I will begin radiation therapy (R.T.) the following week, Monday - Friday.
The consultation reveals I am in an active state and a good candidate for R.T. Dr. Hochman maps my feet. He has palpitated both feet and both hands. No further disease is found. Just this right foot, two nodules. He sets me up with the team that makes the mold, a shield that contains the dose of radiation to the space on the foot being treated. I also get 4 tattoos to mark for spots so they can use this to ensure the location of the treatment field. Yep, it was a pretty good sting in the bottom of your arch, that skin is thin. This process takes appx 2 hours and I am out the door to return on Monday! Dr. Hochman's office has already taken care of the insurance coverage and communicated all of that with me. The appointment was seamless.
The photo below is 11 weeks post radiation therapy from the first session of treatment. The remarkable difference is the fibroma not nearly as "pointy" as it was prior to treatment. The skin appears to be puffy but was not swollen feeling, nor any edema or swelling felt.
http://www.dupuytrensdiseasesupport.com/what-is-ledderhose-disease.html
The statements or any opinions expressed within this website or any related or advertised sites are not intended to diagnose, treat, cure or prevent any disease. Any advice or comments given should not be relied upon as individual medical advice. No doctor patient relationship is intended everyone is advised to consult their own doctors for medical advice specific to them. There is no endorsement nor recommendation of any treatment nor physician noted on this site.
The consultation appointment is set for a Friday. If all goes well, they will map my foot and prepare the molds for the radiation therapy. I will begin radiation therapy (R.T.) the following week, Monday - Friday.
The consultation reveals I am in an active state and a good candidate for R.T. Dr. Hochman maps my feet. He has palpitated both feet and both hands. No further disease is found. Just this right foot, two nodules. He sets me up with the team that makes the mold, a shield that contains the dose of radiation to the space on the foot being treated. I also get 4 tattoos to mark for spots so they can use this to ensure the location of the treatment field. Yep, it was a pretty good sting in the bottom of your arch, that skin is thin. This process takes appx 2 hours and I am out the door to return on Monday! Dr. Hochman's office has already taken care of the insurance coverage and communicated all of that with me. The appointment was seamless.
The photo below is 11 weeks post radiation therapy from the first session of treatment. The remarkable difference is the fibroma not nearly as "pointy" as it was prior to treatment. The skin appears to be puffy but was not swollen feeling, nor any edema or swelling felt.
http://www.dupuytrensdiseasesupport.com/what-is-ledderhose-disease.html
The statements or any opinions expressed within this website or any related or advertised sites are not intended to diagnose, treat, cure or prevent any disease. Any advice or comments given should not be relied upon as individual medical advice. No doctor patient relationship is intended everyone is advised to consult their own doctors for medical advice specific to them. There is no endorsement nor recommendation of any treatment nor physician noted on this site.
Tuesday, March 15, 2016
2015 RADIATION ONCOLOGIST APPOINTMENT IS SET TO TREAT MY LEDDERHOSE DISEASE
Radiation Oncologist Appointment is set, April 2015
I talk with my family even more. I contact Dr. Hochman's office and make a consultation appointment for June 2015 on a Friday.
http://www.dupuytrensdiseasesupport.com/what-is-ledderhose-disease.html
The statements or any opinions expressed within this website or any related or advertised sites are not intended to diagnose, treat, cure or prevent any disease. Any advice or comments given should not be relied upon as individual medical advice. No doctor patient relationship is intended everyone is advised to consult their own doctors for medical advice specific to them. There is no endorsement nor recommendation of any treatment nor physician noted on this site.
I talk with my family even more. I contact Dr. Hochman's office and make a consultation appointment for June 2015 on a Friday.
http://www.dupuytrensdiseasesupport.com/what-is-ledderhose-disease.html
The statements or any opinions expressed within this website or any related or advertised sites are not intended to diagnose, treat, cure or prevent any disease. Any advice or comments given should not be relied upon as individual medical advice. No doctor patient relationship is intended everyone is advised to consult their own doctors for medical advice specific to them. There is no endorsement nor recommendation of any treatment nor physician noted on this site.
Monday, March 14, 2016
2015 NEW RADIOLOGY ONCOLOGIST FOUND FOR MY LEDDERHOSE DISEASE
Given I could never obtain my records to send to the local R.O. I could not see her. I wasn't willing to wait and moved onto speaking with others that had used another R.O. The closest R.O. I could find was Jacksonville, FL and Tampa, FL. I speak with both facilities. I speak again with people have used Dr. Lawrence Hochman, R.O. with Florida Cancer Affiliates in New Trinity, Florida (just outside Tampa, FL). I ended up self referring myself to him since I could not obtain my medical records.
http://www.dupuytrensdiseasesupport.com/what-is-ledderhose-disease.html
Dr. Lawrence Hochman has treated several people I spoke with. His familiarity of the disease and personal recommendations was why I chose him.
http://floridacancer.com/physicians/lawrence-hochman-do-facro/
The statements or any opinions expressed within this website or any related or advertised sites are not intended to diagnose, treat, cure or prevent any disease. Any advice or comments given should not be relied upon as individual medical advice. No doctor patient relationship is intended everyone is advised to consult their own doctors for medical advice specific to them. There is no endorsement nor recommendation of any treatment nor physician noted on this site.
Saturday, March 12, 2016
2015 MEDICAL RECORDS NIGHTMARE DURING MY LEDDERHOSE TREATMENT SEARCH
The medical record nightmare 2015
So you think your medical records are yours and you just sign a form and get them, right? Well I did too! I actually went to my podiatrist office and signed the form for the records to be released to UAB. A few days later I contact Dr. Ruby Meredith's office and find out they don't have my records, hmmm. I phone the podiatrist office and they tell me their computer system was down, but they would get them sent in a couple of days. I think that's actually going to happen. I phone back and find out the computer is still down. Weeks later, the server is down now and still no records. When I filled out the form for the release they asked why I wanted them, I just said I wanted to get another evaluation. Long story short - I was NEVER able to get the records for myself nor sent to Dr. Meredith. Do I feel the server was down and they were unable to get me the records - OR - do I believe the doctor knew they were going to the R.O. dept and just conveniently found the server to be the reason for my records not to be available. I'll not post my thoughts. I will say this - until this day in 2016 I have NEVER found a doctor to be willing to even discuss RT as an option for this disease. They clam up and act like a mute.
Note: Radiation Therapy is an often used therapy for this disease in another country. Many times we are left to use other studies as our(meaning the USA) own research since we are not providing the medical treatment here and doing the studies here. Surgeons seem to tell people that R.T. will give you cancer. Thankfully with this low dose and the typical age of people who get this disease, our risk is less than 1%. I've learned a lot and one of the most important things I have learned is that surgeons are trained to be just that, a surgeon. They have no training on R.T. and I believe this is a black hole for them. It's not their expertise and they have no knowledge about it. Also, if R.T. is successful they lose business. So, I can see why they are not R.T. friendly.
http://www.dupuytrensdiseasesupport.com/what-is-ledderhose-disease.html
The statements or any opinions expressed within this website or any related or advertised sites are not intended to diagnose, treat, cure or prevent any disease. Any advice or comments given should not be relied upon as individual medical advice. No doctor patient relationship is intended everyone is advised to consult their own doctors for medical advice specific to them. There is no endorsement nor recommendation of any treatment nor physician noted on this site.
So you think your medical records are yours and you just sign a form and get them, right? Well I did too! I actually went to my podiatrist office and signed the form for the records to be released to UAB. A few days later I contact Dr. Ruby Meredith's office and find out they don't have my records, hmmm. I phone the podiatrist office and they tell me their computer system was down, but they would get them sent in a couple of days. I think that's actually going to happen. I phone back and find out the computer is still down. Weeks later, the server is down now and still no records. When I filled out the form for the release they asked why I wanted them, I just said I wanted to get another evaluation. Long story short - I was NEVER able to get the records for myself nor sent to Dr. Meredith. Do I feel the server was down and they were unable to get me the records - OR - do I believe the doctor knew they were going to the R.O. dept and just conveniently found the server to be the reason for my records not to be available. I'll not post my thoughts. I will say this - until this day in 2016 I have NEVER found a doctor to be willing to even discuss RT as an option for this disease. They clam up and act like a mute.
Note: Radiation Therapy is an often used therapy for this disease in another country. Many times we are left to use other studies as our(meaning the USA) own research since we are not providing the medical treatment here and doing the studies here. Surgeons seem to tell people that R.T. will give you cancer. Thankfully with this low dose and the typical age of people who get this disease, our risk is less than 1%. I've learned a lot and one of the most important things I have learned is that surgeons are trained to be just that, a surgeon. They have no training on R.T. and I believe this is a black hole for them. It's not their expertise and they have no knowledge about it. Also, if R.T. is successful they lose business. So, I can see why they are not R.T. friendly.
http://www.dupuytrensdiseasesupport.com/what-is-ledderhose-disease.html
The statements or any opinions expressed within this website or any related or advertised sites are not intended to diagnose, treat, cure or prevent any disease. Any advice or comments given should not be relied upon as individual medical advice. No doctor patient relationship is intended everyone is advised to consult their own doctors for medical advice specific to them. There is no endorsement nor recommendation of any treatment nor physician noted on this site.
Friday, March 11, 2016
2014 DART GROUP ON FACEBOOK, I FIND A LOCAL RADIOLOGY ONCOLOGIST FOR MY LEDDERHOSE DISEASE
DART - Dupuytren's Advocates for Radiation Therapy is formed and I join in April 2014!
https://www.facebook.com/groups/1622748151282109/
This group's sole focus is on Radiation Therapy for this disease. It has an immediately influx of people. People who are interested in it AND people who have had it!. I soak every single post and article written. I contact people who have had this treatment. I even find someone in my own town of Birmingham, AL that has been treated, AND they have been treated locally at University of Alabama at Birmingham Hospital (UAB). I start conversation with my family about this possible treatment. I believe I have literally gotten them sick from hearing about the pain that they are happy as ever there may be some treatment available.
I connect with several people on this DART group and discuss their situation. I call UAB and speak with Dr. Ruby Meredith's office (Radiation Oncology dept at UAB). Dr Meredith treated a gentleman in this group appx 5 years ago. His disease has stabilized and has had no further growth. I am feeling reluctant and scared but I make the call and find out she's treated Dupuytren's (the hand), but not Ledderhose (the feet). BUT, she's willing to talk with me. She needs my medical records to show the diagnosis.
The statements or any opinions expressed within this website or any related or advertised sites are not intended to diagnose, treat, cure or prevent any disease. Any advice or comments given should not be relied upon as individual medical advice. No doctor patient relationship is intended everyone is advised to consult their own doctors for medical advice specific to them. There is no endorsement nor recommendation of any treatment nor physician noted on this site.
https://www.facebook.com/groups/1622748151282109/
This group's sole focus is on Radiation Therapy for this disease. It has an immediately influx of people. People who are interested in it AND people who have had it!. I soak every single post and article written. I contact people who have had this treatment. I even find someone in my own town of Birmingham, AL that has been treated, AND they have been treated locally at University of Alabama at Birmingham Hospital (UAB). I start conversation with my family about this possible treatment. I believe I have literally gotten them sick from hearing about the pain that they are happy as ever there may be some treatment available.
I connect with several people on this DART group and discuss their situation. I call UAB and speak with Dr. Ruby Meredith's office (Radiation Oncology dept at UAB). Dr Meredith treated a gentleman in this group appx 5 years ago. His disease has stabilized and has had no further growth. I am feeling reluctant and scared but I make the call and find out she's treated Dupuytren's (the hand), but not Ledderhose (the feet). BUT, she's willing to talk with me. She needs my medical records to show the diagnosis.
The statements or any opinions expressed within this website or any related or advertised sites are not intended to diagnose, treat, cure or prevent any disease. Any advice or comments given should not be relied upon as individual medical advice. No doctor patient relationship is intended everyone is advised to consult their own doctors for medical advice specific to them. There is no endorsement nor recommendation of any treatment nor physician noted on this site.
Thursday, March 10, 2016
2014 FACEBOOK FORUMS ON DUPUYTRENS and LEDDERHOSE, A LIFE SAVER FOR ME
The Facebook Dupuytren's Contracture group leads me to a new Facebook group April 2014
So I joined the Dupytren's Contracture Facebook group. https://www.facebook.com/groups/DupuytrensContracture/There are tons of people from the USA on here and some of them even have Ledderhose Disease! I am finally feeling validated for my feelings. Many people are experiencing the exact same symptoms I am having. Many people on this site have the more common Dupuytren's Disease and many of them are having surgery for it. I read more and find out that disturbing this collagen seems to put this disease into an active mode and it starts to grow. I found out there is NO CURE. Cutting it out is not an answer, but seems more like a curse. My pain is at an even more all-time high and honestly, I am willing to do anything for some help at this point.
While on this group, there is a small sector of people discussing this "radiation therapy" I had read about in Germany. AND....someone in the USA has had this done! I am sucked into this group, trying to absorb all the information I can. The comments being made about this seem to be concerning, why would anyone elect to have radiation therapy? Isn't that for people that have cancer? I've never known anyone to elect to have radiation therapy.
http://www.dupuytrensdiseasesupport.com/what-is-ledderhose-disease.html
The statements or any opinions expressed within this website or any related or advertised sites are not intended to diagnose, treat, cure or prevent any disease. Any advice or comments given should not be relied upon as individual medical advice. No doctor patient relationship is intended everyone is advised to consult their own doctors for medical advice specific to them. There is no endorsement nor recommendation of any treatment nor physician noted on this site.
So I joined the Dupytren's Contracture Facebook group. https://www.facebook.com/groups/DupuytrensContracture/There are tons of people from the USA on here and some of them even have Ledderhose Disease! I am finally feeling validated for my feelings. Many people are experiencing the exact same symptoms I am having. Many people on this site have the more common Dupuytren's Disease and many of them are having surgery for it. I read more and find out that disturbing this collagen seems to put this disease into an active mode and it starts to grow. I found out there is NO CURE. Cutting it out is not an answer, but seems more like a curse. My pain is at an even more all-time high and honestly, I am willing to do anything for some help at this point.
While on this group, there is a small sector of people discussing this "radiation therapy" I had read about in Germany. AND....someone in the USA has had this done! I am sucked into this group, trying to absorb all the information I can. The comments being made about this seem to be concerning, why would anyone elect to have radiation therapy? Isn't that for people that have cancer? I've never known anyone to elect to have radiation therapy.
http://www.dupuytrensdiseasesupport.com/what-is-ledderhose-disease.html
The statements or any opinions expressed within this website or any related or advertised sites are not intended to diagnose, treat, cure or prevent any disease. Any advice or comments given should not be relied upon as individual medical advice. No doctor patient relationship is intended everyone is advised to consult their own doctors for medical advice specific to them. There is no endorsement nor recommendation of any treatment nor physician noted on this site.
Wednesday, March 9, 2016
2013/2014 DUPUYTREN'S CONTRACTURE FACEBOOK FORUM FOUND
I found a Facebook group for Dupuytren's Contracture! Late 2013/early 2014
https://www.facebook.com/groups/DupuytrensContracture/
One night while laying in the bed with my heating pad on my right foot (as always), I am in so much pain and I roll over, grab my ipad and on a whim I log onto Facebook and search to see if there is a group formed about this disease. Low and behold there is!!!! It is called Dupuytren's Contracture. I immediately apply to join the group. It's a closed group and by now I can't sleep at all. I have to wait to be admitted to the group. It has almost a thousand people in it. It was an Oh My Gosh moment for me. I was admitted the following day and this is the link that will change my life forever!
http://www.dupuytrensdiseasesupport.com/what-is-ledderhose-disease.html
The statements or any opinions expressed within this website or any related or advertised sites are not intended to diagnose, treat, cure or prevent any disease. Any advice or comments given should not be relied upon as individual medical advice. No doctor patient relationship is intended everyone is advised to consult their own doctors for medical advice specific to them. There is no endorsement nor recommendation of any treatment nor physician noted on this site.
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