This list is based on the most supportive things that our loved ones did for us. Hopefully, they can be helpful to you too!
Learn About JXG
It is extremely comforting to the JXG parents to know that you took the time to educate yourself about this condition. One of the most challenging aspects of JXG is that almost nobody knows what it is and that contributes to the feeling of isolation and sadness that the families experience. It is a precious gift to converse with a person that understands what the doctor visits and treatments are about as well as the obstacles JXG presents on a daily basis. Under the “About JXG” and “FAQ” tabs of this blog there is a lot of friendly information on this disease.
Help to Fight Back
One of the most powerful things that you can do for JXG families is joining their fight to find a cure for this disorder. There are many different ways that you can do it. At the top of this web page, under the “Take Action” tab, you will find several options to contribute to the cause. You will discover that some take less than 2 minutes and they are completely free! I guarantee you that your actions will make your JXG champ and their family feel loved and cared for.
Asking is Always Best
Since every case is unique and every person’s needs are different, asking the JXG parents how you could support them is the best thing you can do for them and their family. As strange as it may sound, initially, I could not imagine anything that anybody could do to make me us feel better. But after a few friends asked this question, it got us thinking. First, we realized that my husband and I needed very different things. I asked my girlfriends to check on me before and after Santi had his doctor and lab work appointments. My spouse, instead, rather not to talk about it and did not like people asking him questions at all. Second, we discovered that our needs changed as time went by. I recognize now that I asked these friends to meet my changing needs as I was working through the grieving process.
Let them Know that You are There
You, more than me, know the person and the family that you are trying to help and what channel of communication works best for them. However, there are a few things to be considered. For me as well as for many of the JXG parents I talked to, a visit or a call are better avenues to express your support than to send an email or a text. During difficult situations, most people are more sensitive than usual and some can even be oversensitive. The lack of body language and sound that accompany emails and texts can feel unpersonalized, cold and sentences can be misinterpreted. Also the absence of instant feedback leaves no room to quickly clarify any confusion.
Remember, You Do Not Have to Fix It
After I started to write the blog for a few months, some of our close friends and family members that did not contact us at the beginning finally did it. Most of them told us very sincerely that they did not show up earlier because they just did not know what to say to us. I believe that this happens to a lot of people. But please remember, the only thing that we need to hear is something like: “I am so sorry about the news. I want you to know that I am here for you and your family. What can I do to support you during this time? In all honesty, anything else is redundant.
Do Not Minimize or Compare
Many times in a well intentioned attempt to lift the spirits of the JXG parents, loved ones would say things such as: “Don’t worry about it too much. It is a benign condition”. “It is not that bad. It is just an aesthetic problem”. “Don’ be so concerned, it will go away”. “You should be glad is not something worse, look what happened to XX’s baby”. “Be grateful that is happening now when he is so young. He won’t remember anything later”. “Each family has its own drama and this is what God decided for you”. The reality is that as any other rare disease, JXG is a very challenging condition to face. Not knowing what causes it, when it will regress, how much more it will advance make the level of uncertainty almost unbearable. For those whose children have the systemic version of the disease, it is like having your child suffering from cancer but with almost no research. The treatments for this expression of JXG are quite invasive since chemotherapy or radiations are usually involved. For the parents whose kids have Skin only JXG, the fear that it could become systemic is a constant ghost in the back of their minds. The periodic blood work appointments and the eye exams are frequently draining and stressful. And of course, dealing with the lack of general understanding of the condition, unfortunate comments and continuous inappropriate looks does not make it any easier either. I suggest to abstain from sentences like “I have not idea what you are going through but…”
Avoid Giving Advice unless Asked
In the early weeks after receiving the news about Santi’s diagnoses, we received many well intended advised that did more harm than good. The problem was that people thought that they understood what we were going through and but they did not. This suggestion includes refraining yourself of giving medical hypothesis and familiar counseling unless asked directly.
Teach your Kids about Diversity
Explain to your children what JXG is according to their age and teach them to see beyond the lesions. Ask them to be nice with the JXG hero and their family and use this opportunity to talk about the diversity in the world.
