Lupus Support Group

Hello Everyone, my 17 year old son has finally had his appointment with the consultant after being very poorly in November. After a long series of questions and examination the consultant said that he may have lupus but at this stage she didn't want to give an absolute firm diagnosis but told us to look out for a rash, dry eyes and mouth and sun sensitivity (alarmingly, I have symptoms very similar to my son and also have dry eyes and mouth and intermittent rash). My son has been on a rollercoaster of emotion this week, from an initial deep low where he questioned if he should ever have children in case he passed it on to them to wanting to get fit, I think in an effort to fight back at in in rebellion. I would be really grateful if any of you, parents or younger people with lupus could share their experiences of living with it and what changes they have made to enable them to (hopefully) still live productive lives. I am so proud of my son. For a long time his ambition was to serve in the armed forces, ideally as a pilot but he already knew that his fitness levels and lack of ability to get them back up to his previous levels would prevent him from doing this and so he has already put his mind to other things he could do which are less physically demanding. I've already told him I'm proud of him and love him but I want everyone else to know too.

Try not to worry too much about this until you get the diagnosis confirmed. That should be done by a rheumatologist, and the process takes a while for some people. I have only been diagnosed for a couple of months, and I just started treatment. I won't really have any improvement for several months, but I am hopeful.

I am a parent of two girls. I really rely on my husband, parents, and grandparents for help. I teach full time, and that takes most of my energy during the week. In the afternoons, I am not able to do very much due to tiredness and pain. I know that this is not what you want to hear, but I think your son may be experiencing similar problems in these areas already. There are many more people on here who are more advanced in the treatment and have seen results. I am sure that they will post later.

I will let you know more as the treatment starts helping.

I agree with knitmama.....once you get the diagnoses confirmed for your son than you can talk treatments with the doctor and go from their. I have been living with Lupus for 18 years now and have been on many medications.....I have good days and bad and your son will experience this as well. I will pray that you get the diagnosis soon and get him started on treatment....also another important thing is to always keep positive even when you don't feel well or having a really bad day as it does make a difference. I wish you and your son the best.

Eva

I think these ladies have given you great advice and you should be really proud of your son. I think early on all of us go through many emotions trying to figure out where we go from here. Even when the diagnosis sinks in we still have good days and bad. I think it is just part of all of this. Keeping a positive attitude is really important. It is also great that he has a supportive family. That is what gets us through the hard days. I hope that all goes well for him and we are all here anytime you have questions or just need to vent the frustration.

April