Already a member? Sign in
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Hello, l have recently been diagnosised with VHL and l am looking for others who are going through the same issues with this disease. I am 46 years of age and l maybe applying for disability. lt is hard for me to keep a job and friends and would like to find someone who can understand what l am going through and where l am going. Please l need help!
We are here. How can we help!
Gale
us-fl@vhl.org
Good Morning.
I've also been tested positive for VHL and already had a few operations. I will help where I can.
Regards
Markus
Hi!
Welcome to the club! I know it is a scary thing to learn about having a chronic condition/disease. I just found out I have VHL less than 2 years ago. One thing that helped me, is that we have had this all our lives and did not know it! Now that we have been diagnosed, we can get the help we need. This is a wonderful support group, and the VHL Alliance with the VHL handbook are also a MUST!!!!!
Let me/us know what we can do to help.
Best of Health to us all,
Tina
Hello there,
I was told a little over a year ago that I have VHL and it seems ever since that my health has gone down hill. I am going to talk to my doctor about CPP because I too have a hard time trying to work with so many appointments and most of the time not wanting to get out of bed because of the pain. I will try to help as much as I can. You have came to the right place people on here help out soo much. Take care
Welcome chewy. Yes, you have come to the right place. I can understand how hard it is to try and work while you're sick.
I also went through dealing with my friends avoiding me when I first got sick and was diagnosed. People can be funny sometimes, it's almost like they think they can catch something from you. At least that is how I viewed it. Things will be okay. Your true friends will stick by you.
What are are you from?
You all are so brave and I admire you all! Best of luck with everything.
I'm not sure if any of you have seen my previous post in the discussion on Family Health History Booklets but I am an intern at Genetic Alliance and we are working on customizing our "Does It Run in the Family?" booklet series for the VHL community. I am looking for some people with VHL to interview for the personal stories included in the book. If anybody is interested in helping me out with this project by sharing your personal story please let me know!!! You can email me at melinda@vhl.org or just reply right here. Hope to talk to some of you soon!
hey i just got the call last week that i tested postive for vhl . my dad had it and so does others.we just found out that was what it was so if anyone would like to talk i am here. i am on disabltiy at the time
best to every one
My husband is 47. He is the first in his family be diagnosed with VHL. In fact his genetic testing was negative but he has hemangioblastomas in his bran and spine. We just submitted his application for Social Security Disability. I've been told that appllications are often denied and that we should be prepared to appeal. I found the detailed questions very difficult as they ask for an exact date when he couldn't work. He is a salesman and he has been trying to work but when a person doesn't even feel like getting out of bed it's hard to be nice and call on customers, return phone calls, etc. I've talked to both his oncologist and his neurologist and they both were very supportive of us applying for disability. Mornings are especially hard on him. For a long time he would go into his office for a few hours in the afternoon. But I realized that even went he went to work he probably wasn't really working. His co-workers have been taking care of his customers for him. Thankfully I carry our family's health insurance so that is not an issue. He started seeing a clinical pscychologist, too, to help him deal with the emotions he's going through. I was pleasantly surpised to learn that our health insurance covers those appointments too. My husband and I have both learned that people do what to help us out -- they just have to be asked. I've gotten help for lots of things, it's humbling but people actually feel good about helping to lessen our load -- just this week a friend came over and cleaned our bathrooms. I have a hard time keeping up with my husband's appointments, my job, our 4 children, and the house. Once in awhile someone brings us a meal, or takes the car to get the oil changed. It's not that I can't do those things, it's just that it is a way for others to show their love and support. It's hard to ask -- I keep a notebook and list all the ways people have helped us and when I'm feeling alone or overwhelmed I can look at that list and realize the many blessings we've received.
Thank you Markus, l really appreciate that. It's not easy to keep up with all of my appointments and sit there for my results to find out more bad news. Through these last few years l only been getting worse where even my own friends don't even reconize me. lt is so frustrating for me. l wish you well in your journey. Thank you for your support.
Thank you TinaDiane, thank you for your support. l do have the handbook and even though i may have had it all my life it still does not make it easier to cope with. these last couple years i have noticed myself how much l have changed. l wish you well in your upcoming adventures.
Melani, thank you for your reply. l can use all the support l can get. l feel like l am on a roller coaster ride for the last 6 mos. l want to get off and continue with my life the way it use to be, not.
Thank you for your reply. l maybe intrested l am just getting started knowing who l am today. l would like to know more about you and what you are doing. Keep in touch.
l am just starting with disability myself and l am not looking forward to this change. lt will be hard to support myself while l apply and wait for an answer. l do not have money or a job to pay the bills while l wait. l do not know how it will work. l feel l have lost everything in my life.
You are lucky you have such support. l feel l am alone and have nothing to fall back on. thank you for your reply.
Hi To Everyone,If I may shed some light on the subject about social security disability.I just was approved for my disability Jan.26th 2009,after 3 long years,they did however take a clinical diagnosis of Vhl.There are some very important things I will try to fill you in on that might help speed up things for those of you that need disability.I know that the more doctors you have and the closest of a diagnosis you get will help a great deal.It is really important how the Doctors you have word their reports.It is not the same for everyone,do know that most everyone gets denied the first time they applly,it is also very important that you try not to go it alone,after your first denial find a good social security lawyer do not delay,People who are blind and have Als almost have no waiting.The lawyers you hire are paid only if they win your case.Stay with your doctors that know all about you and your issues concerning Vhl.I know that social security has added 50 new rare dieases to their list of dieases that qualify individuals to get disability.The paper work is many and continues throughout both for social security and for your lawyers,do not let that scare you,it gets very frustrating to say the least.I have learned alot the 3 years waiting for them,remember I did not have the DNA,so that is one of the many reasons for my long wait.I also was new to Vhl and so were my doctors and hospitals.Try not to doctor hop, if you have doctors that know all about you and have been treating you for some time and you both see eye to eye, that will be the most important part of this process.When filling out the forms please be honest about your health and all of your issues at hand and the things that you have gone through and do not let anyone tell you it is all in your head. We know that Vhl is being reconized by the social security as a disability, so stay with it and don,t get discouraged.I had the great opportunity to bond with my doctor over this period, and at the end of the hearing my lawyer told me that I could thank my one Doctor who stayed with me through all of this long wait,and he had the patience to learn about Vhl,and put other doctors at bay when they tryed to confuse everyone with a different diagnosis.The more you have on your disease that is available to the social security, the better things will go.If I can do it, all of you that need it can also,remember to get all medical copies,and everything and anything you fill out or any paper work that is transfered through the process get copies of everything I mean every last tiny piece of paper,it will be for your own good,there are alot of glitches in the system,so protect yourself.The best that I can say is that you are the only one who knows how sick you are,and what you are limited in doing on a daily basis,stay away from the negative people who want to make you back off from going forward.Remember that know 2 cases are the same and that not everyones illness affects them the same.By the way Binder and Binder did an awesome job and they now know about Vhl,every lawyer does not know,it will be up to you to educate them as well.Every state has social security lawyers who will help you don,t delay,send them the handbook, pamplets and anything else you have on your Disease it will help them help you. Good luck to all of you and don't get discouraged.It took me 2hrs to get this e-mail finished because my arms hardly work,but my mouth and hands are still with me.Do not be afraid to use both. I to went with no money and know medical coverage but the Good Lord some how got me where I needed to go. Don't be afraid to ask for help keep the faith. All my best Jeannie
HeyChewy!
I do not have VHL, but people in my family do. It is not the easiest thing to find out, and it must be hard but now you can take the next step in treatments. We are all here for you: )
Hi to oll!
Am from Lithuania, so i am not realy good in english, so sorry for my mistakes in writing.
My father had VHL, he died 11 years ago. About a two month ago my sister get clinikal diagnose for VHL, and about a week ago she get DNR test positiv for VHL.
Next week will be known my DNR test results for VHL.
It is realy har for my mom, because my sister is only 18 years old. My sister already haw cysts (i will call them tumors) in kidney, spinal cord and brain. The tumor in brain is not so bat rigth now. She had kindey resection and now we are thinking about operation on spinal cord.
It is realy nice, that is VHL Family Alliance! I think i will find a lot of usefull information here.
Hi - I know it can be a scary thing to be first diagonsed with VHL. I hope I can bring you comfort when I tell you I was diagonsed 18 years ago (when I was 21), my brother even longer! We both live active and productive lives. I had 4 major surgeries in less than 4 years, have been healthy for almost 7 years and was recently told I had new fluid around some growths. Believe me, that is not what I wanted to hear.
I don't want you to think I am trivalizing your fears, but I want to encourage you to be a fighter! You need to educate yourself about VHL and treatments, this (I hope) will bring you some peace of mind. I don't know that VHL ever goes away, but the key is to get tests ex, MRI, CAT, etc. on a regular basis and deal with problems when they arise (believe me, you can feel pretty crappy if you don't!). I know you can get through this if you stay focused and try to see the positives - you are not alone and this is a great forum to talk to others and let us help you work through this.
Keep your chin up,
Kim
We just received a letter of notification that my husband was approved for Social Security Disability. I am so relieved but it is hard for him.
Hi, Tammy. Glad the disability paper work came through finally. I understand, though, that there can be up to 2 years waiting period before Medicare is enabled for people new to Social Security.
Be sure not to slack off with the scans and checkups during that 2-year waiting period! I know it costs money, but not keeping up with VHL will cost you a great deal more in the long run. So do your best to keep on top of things, even during this waiting period.
Yes, it's emotionally difficult to move into the "disabled" category. It's important to realize that this is not about his intelligence, or his worthiness as a human being. It is only about his physical condition.
Perhaps others here can share their own experiences, and how they got through it.
Best wishes,
Joyce
Add to the discussion