Discoid Lupus

[Biri]

Hi all

As the scarring caused by discoid lupus progresses friends of my sons (aged 4 and 6) are now asking questions about what’s wrong with my face which is about 60% effected.

I welcome their inquisitive nature but I’m kind of stumped as to what I should tell them when asked.

Any suggestions?

Thanks!

Andrew

[Louiseclinton]

Hi Biri iv got discoid Lupus and a few scars on my face but nothing where people are asking..Iv been using Aloe vera organic gel on my face for a good few years now and it helps with the healing of lessions..I used to put it on under my steroid cream which iv not used for a few years aswell I just use aloe gel everyday with factor 50 and try not to be in much sun and it's worked wonders for now..I recommend Aloe vera gel to all who have discoid Lupus as it soothes it aswell as mine used to hurt or get itchy...

[Biri in reply to Louiseclinton]

Hi Louise! That’s brilliant advice, I’ll give it a go.

Thanks so much!

[RachelD1972]

Tell them the truth, it’s a great opportunity to teach them awareness. My nieces are 11 & 16. Both are aware of my DLE and RA. The youngest even tells me when I’ve been in the sun too long! Fortunately I have not got any scars but wonder if Bio oil would help.

[Krazykat26]

I'm with the others biri..if this is gonna be more prevalent in the future kids need to be aware of dangerous uv rays..so start em young I say..no one is immune to autoimmune disease

[corinusha]

Hi Biri, a child would have a difficult time understanding medical terms. Until about 8-9 years they are in what is called "fairy tale phase". You might have better chances to reach them through stories or cartoons where the main character goes through physical changes. The heroes in the stories are always succeeding, so you might be strong as well even though you go through difficult times. It would be nice to search and find a story that fits the situation.

My view is that the blessing of childhood should be kept as long as possible as a blessing and truth can be presented in a form that fits the ears of a child.

Good luck! A challenging mission!

[Cas70]

Simply, the truth ! You have an illness that causes it. Explain it is not contagious. It’s is what I have done. Some lose interest but one granddaughter is fascinated and is researching - spread the word!

[LupieMani]

Echoing the others. Be honest and age appropriate. I got sick when my son was eight, and I explained my symptoms to him. He is 12 now and takes care of me. He is very protective and tells me to sit when he can see me waning, and will scold me to stay out of the sun because I get a delayed systemic allergy.

Hope you feel better soon and the aloe helps with the scarring. Bio Oil or Coconut oil may be good too. Coconut oil is antibacterial and locks in a lot of moisture. It has done wonders for my scalp, which used to be covered in tiny itchy lesions and flaky skin.

[Biri]

Tea tree oil order places. Thank!