Psychological support for people with uncommon conditions is lacking, according to a mother who has a "debilitating" rare disease.
Behçet's disease was discovered in Rachael Humphreys, 42, of Caerphilly almost 20 years ago.
The syndrome, according to her, affects her eyes, skin, and joints and causes "horrendous pain.".
The Welsh government described meeting the "fundamental" needs of patients with rare diseases in terms of their mental health.
"When it flares up, it's really aggressive and knocks me completely off my feet," Ms. Humphreys said.
You do need a lot of advice from experts because it can affect so many different parts of your body. ".
Although she has seen numerous specialists in Wales, she claimed that there is a lack of mental health support.
She claims she has never been offered counseling but takes medication to manage her anxiety.
"You go through this grieving process when you get diagnosed with a rare disease, or any kind of chronic health," she said.
You are now left to deal with a disease that has stampeded into your life because you have lost your health, in reality.
"I go into really intense grief when you have a flare up, for me. both because you are in excruciating pain and because you are becoming aware that your body is malfunctioning. ".
Due to a "lack of support," according to Ms. Humphreys, she founded her own Behçet's disease support group, which currently has about 50 Welsh members.
"We don't have that coordinated approach or the specialized approach to Behçet's in Wales. It involves me trying to direct myself to where they need to go, she said.
According to Prof. Iolo Doull, the head of Wales' Rare Diseases Implementation Group, there are 170,000 to 180,000 Welsh citizens who are affected by rare diseases.
He said, "I think we need to acknowledge that some diseases are so uncommon that perhaps there are only 10 people in the entire UK with that.".
"So if there are many patients in Wales, it is obvious that we would strive to deliver care as locally and as effectively as possible. But occasionally, we must accept that people will travel across the UK to single centers.
The equitable access of patients with rare diseases to mental health support within health boards is crucial. ".
According to Prof. Doull, Wales is setting the standard for rare disease research thanks to better access to medications and the opening of a new clinic in Cardiff that will expedite diagnoses for syndromes that are so uncommon they lack a name.
However, Disability Wales claimed that after receiving a diagnosis, its members frequently feel "pushed off.".
Because the NHS systems in England and Wales are so dissimilar, getting support from both countries or across the border can be difficult, according to disability equality officer Alex Osborne.
"It's one thing if people must travel a great distance for care or surgery; however, it's quite another when they return home and are left entirely on their own to carry on.
"We really want to see a rise in both general support for disabled people and reactive support for those who receive new diagnoses. ".
In response to Ms. Humphreys' experiences, the Aneurin Bevan University Health Board expressed its regret.
As participants in the Rare Diseases Implementation Group's action plan for Wales, a spokesman said, "We are committed to doing our part to help improve the lives of people living with rare diseases.".
"We would advise Ms. Humphreys to get in touch with us directly so that we can talk about her worries and offer her any support she might require. ".
The Welsh government stated: "While local health boards offer mental health support, patients may have to travel further for specialist care for more uncommon conditions, including mental health support.
"We will invest an additional £50 million in 2022–2023 and an additional £90 million in 2024–2025 in a variety of mental health and wellbeing support services.
. "
